My appointment at the Colorado Fibromyalgia Center went really well. I was pleased that the intake Dr spent about 2 hrs with me and was very informative.
The program is treatment based vs diagnosis based so they really focus on treating each person and their symptoms in an effort to eliminate the symptoms so the patient feels better. The treatment program lasts about 4-6 months and optimally they want me to come in 1x a week for treatment. Due to the fact that I'm traveling an hour each way to get there they are willing to work with me and if it is feasible to give me 2 treatments in one appointment they will. Sometimes though, depending on the treatment needed, they wouldn't be able to do that. An hour drive isn't really so bad though.
So I'm going to go forward with the treatment at this center and am, as the title of this entry states, Cautiously hopeful - I don't want to get too excited just in case.....however I do really feel that their treatment approaches are really going to make some significant improvements in my overall health.
The center does take more of a holistic and natural approach to healing - while they do also offer some western medicine treatments when indicated necessary, they do try to use more alternative and holistic approaches.
I am still also pursuing an appointment with the Mayo Clinic while I am getting treatment at this center. I figure I might as well start getting help while I'm working on the Mayo Clinic and between the two I should be able to figure out what exactly I'm looking at as far as the future of my own health is concerned.
Yesterday I was feeling kind of guilty for pursuing both avenues however a friend of mine sent me a video that really reminded me that it's ok to seek help and answers for my own health until I'm satisfied with the results - it's a great video that I recommend you take a moment to watch...........e-patient Dave - I'm certain that most of my readers will agree with the message that is delivered in the video.
While I was at my appointment I also had some blood drawn for a blood test called "micronutrient testing" through a laboratory called "spectracell" - I've included the link for you in case this is something that anyone else might want to look into - I'm really excited to see the results of this test as I really think it's going to lead me and the medical team I'm working with in the right direction to helping my body get back to optimal functioning status.........check out the link to Spectracell laboratories and the information for the Micronutrient blood test. It's pretty interesting stuff!
This week in addition to the unrelenting fatigue, I've been dealing with consistent headaches which have me really feeling crappy but motrin seems to help me get past the pain and get through the day. I've been waking up with the headaches everyday but they haven't been to the point of "migraine" status so I have been ok with just a nice dose of mortrin a couple times a day. I'm not certain as to why the headaches have returned but figure it's just part of everything else, could be heat related, medication related - who knows why any of this happens at this point.....
I am looking forward to getting started on my treatments with the Fibromyalgia Center. As of now I have a phone appointment on July 8th with the Dr to go over her findings from my medical records and yesterday's visit and the proposed treatment plan. Then on the 11th I'll go in for my first appointment with the massage therapist and the Dr who does nutrient injections.
Part of my treatment will be massage therapy which will help "desensitize" my muscles and tissues - I had told the Dr yesterday that I don't enjoy massages as it causes pain for several days following so she feels that working on desensitizing my muscles and tissues will be an important part of my treatment - this will also serve to help release tension areas that is causing other problems in my body. As the belief in this type of treatment plan is that when one part of the body is under stress or not optimal it will effect other parts of the body that and so on as everything is connected to work together. I wish it was enjoyable for me to get a massage - maybe someday it will be.
Until next time, my journey continues as I move closer to my goal of getting back to how I was prior to the onset of this craziness or even better than that! I'm really looking forward to the beginning of something great that could end up proving to heal me even beyond my expectations.
Thursday, June 30, 2011
Tuesday, June 28, 2011
I have an appointment
at the Colorado Fibromyalgia Clinic tomorrow morning. I'm nervous, excited and hopeful for what will come from this appointment. I'm sitting here with a 16 page "questionnaire" that I need to fill out for them too....they certainly cover all the bases but some of the questions are very vague. I will do my best to answer everything as best I can and give as much information as I'm able to give.....there is so much to what's been going on.
Update from my last post: I'm feeling better from the cold/sinus infection - I guess the meds took care of that! I got worried during the course of antibiotics as my chest was really tight for a couple days but that went away thank goodness. My primary Dr contacted the Mayo Clinic as he had said he would and apparently they needed him to fill out some forms then I received a call this week from the Dr office telling me the Mayo Clinic wants me to have a physical with my primary......I'm not sure if this is a pre-screening type thing or what is going on really. My Dr has me coming in for this physical on Friday of this week so hopefully I'll find out more information from him during that appointment. He seems to be really on top of it and helping me out so I do appreciate that! In the meantime I'm also going to this other clinic just in case the Mayo Clinic doesn't accept me or has a really long wait to see me.......seems like between all the appointments and exams someone will figure something out. There are so many possibilities of what is going on I really hope I am on the right path to getting it figured out.
Today I was out for a few hours doing some much needed grocery shopping - I'm wiped out from that! Crazy how going to 2 stores over a 3 hr period just takes everything out of me. I hate it.
It's so hard to explain to someone who has never had to deal with this type of chronic illness just how tired I always am or how ill I feel most of the time. Over the past several days I've also had some pretty bad headaches which has just added to everything else. On a good note, my medication is keeping most of my pain at bay so I'm mainly dealing with the headaches and extreme fatigue constantly. Honestly I just don't understand really why I can sleep 10+ hrs a night and still wake up so tired.....it takes me a good hour or longer to really fully wake up and then after a few hours I'm just spent even if I haven't done anything. It really takes all I have to spend the day out and about with the family or just doing things that need to get done. I really want my life back! I'm too young to be so tired and lacking energy all the time!
On another note and something interesting I found today on one of the many Fibromyalgia support group sites I belong to. I read some information from someone who was bedridden for 4 yrs with CFS/fibro.....this person wrote a book about it but also shared a list of supplements that she claims helped her to get her life and health back. They are supplements that can be purchased anywhere that sells vitamins so I'm going to take the list to the Dr to see if it's something I should be doing.......some I already have been taking off and on, some I would need to go get but before I do that I want to ask the Dr. what she thinks. If you remember, earlier in the year I had started taking some supplements that I had read about but, because I didn't see any change in my condition I stopped taking them.......I'm really bad about that when I don't see an improvement.
For those of you who might be interested, the recommended supplements and amounts are:
Co-Q-10 - 100mg This is essential for every cell in the body for energy. The new form of Co-Q-10 called Ubiaquinol helps by adding more energy because it is already broken down and goes right to work by attaching to the cells in the body to produce energy.
B-12 sublingual 500 mcg twice daily, this is dissolved under the tongue and is more effective and helps with energy and the nervous system.
Calcium 1000mg, magnesium 400mg and zinc 25 mg.
Calcium for bones; magnesium for inflammation; zinc for immune system health.
Vitamin C 500mg once daily for immune system
Vitamin E 400 Iu once daily Immune system and energy
Vitamin D-3 1,000 Iu twice daily. Helps with vision problems and long bone pain (if you are deficient of Vitamin D, your doctor will have you take a larger dose). Most people with CFS/ME or FM are so difficient that they need larger doses, so it’s a good idea to have it checked by a Vitamin D 3 blood test.
Ginkgo Biloba 60 mg once daily helps memory and brain fog.
Garlic 500 mg once daily (oderless). Good for immune system and is a natural antibiotic.
Omega 3 Salmon Oil 500mg twice daily. Good for immune system and heart health and helps to balance hormones. Many fish oils contain shellfish to which some people are allergic. For this reason, Salmon Oil might be the better choice.
Milk Thistle 175mg twice daily for 3 months, then 1 per day for liver health. To be taken with Probiotic Acidophilus twice daily for 3 months, then 1 per day for intestine well-being.
Milk Thistle and Acidophilus remove toxins from the body and help retard yeast build up
Wish me luck! I'll definitely post an update tomorrow from my appointment at this Fibromyalgia clinic. It's about 2 hrs away so I'll be gone all day but will get an update out as soon as I can once I return. Hopefully there will be some good news and hope for this journey to finally take a turn towards a healthier me!
Update from my last post: I'm feeling better from the cold/sinus infection - I guess the meds took care of that! I got worried during the course of antibiotics as my chest was really tight for a couple days but that went away thank goodness. My primary Dr contacted the Mayo Clinic as he had said he would and apparently they needed him to fill out some forms then I received a call this week from the Dr office telling me the Mayo Clinic wants me to have a physical with my primary......I'm not sure if this is a pre-screening type thing or what is going on really. My Dr has me coming in for this physical on Friday of this week so hopefully I'll find out more information from him during that appointment. He seems to be really on top of it and helping me out so I do appreciate that! In the meantime I'm also going to this other clinic just in case the Mayo Clinic doesn't accept me or has a really long wait to see me.......seems like between all the appointments and exams someone will figure something out. There are so many possibilities of what is going on I really hope I am on the right path to getting it figured out.
Today I was out for a few hours doing some much needed grocery shopping - I'm wiped out from that! Crazy how going to 2 stores over a 3 hr period just takes everything out of me. I hate it.
It's so hard to explain to someone who has never had to deal with this type of chronic illness just how tired I always am or how ill I feel most of the time. Over the past several days I've also had some pretty bad headaches which has just added to everything else. On a good note, my medication is keeping most of my pain at bay so I'm mainly dealing with the headaches and extreme fatigue constantly. Honestly I just don't understand really why I can sleep 10+ hrs a night and still wake up so tired.....it takes me a good hour or longer to really fully wake up and then after a few hours I'm just spent even if I haven't done anything. It really takes all I have to spend the day out and about with the family or just doing things that need to get done. I really want my life back! I'm too young to be so tired and lacking energy all the time!
On another note and something interesting I found today on one of the many Fibromyalgia support group sites I belong to. I read some information from someone who was bedridden for 4 yrs with CFS/fibro.....this person wrote a book about it but also shared a list of supplements that she claims helped her to get her life and health back. They are supplements that can be purchased anywhere that sells vitamins so I'm going to take the list to the Dr to see if it's something I should be doing.......some I already have been taking off and on, some I would need to go get but before I do that I want to ask the Dr. what she thinks. If you remember, earlier in the year I had started taking some supplements that I had read about but, because I didn't see any change in my condition I stopped taking them.......I'm really bad about that when I don't see an improvement.
For those of you who might be interested, the recommended supplements and amounts are:
Co-Q-10 - 100mg This is essential for every cell in the body for energy. The new form of Co-Q-10 called Ubiaquinol helps by adding more energy because it is already broken down and goes right to work by attaching to the cells in the body to produce energy.
B-12 sublingual 500 mcg twice daily, this is dissolved under the tongue and is more effective and helps with energy and the nervous system.
Calcium 1000mg, magnesium 400mg and zinc 25 mg.
Calcium for bones; magnesium for inflammation; zinc for immune system health.
Vitamin C 500mg once daily for immune system
Vitamin E 400 Iu once daily Immune system and energy
Vitamin D-3 1,000 Iu twice daily. Helps with vision problems and long bone pain (if you are deficient of Vitamin D, your doctor will have you take a larger dose). Most people with CFS/ME or FM are so difficient that they need larger doses, so it’s a good idea to have it checked by a Vitamin D 3 blood test.
Ginkgo Biloba 60 mg once daily helps memory and brain fog.
Garlic 500 mg once daily (oderless). Good for immune system and is a natural antibiotic.
Omega 3 Salmon Oil 500mg twice daily. Good for immune system and heart health and helps to balance hormones. Many fish oils contain shellfish to which some people are allergic. For this reason, Salmon Oil might be the better choice.
Milk Thistle 175mg twice daily for 3 months, then 1 per day for liver health. To be taken with Probiotic Acidophilus twice daily for 3 months, then 1 per day for intestine well-being.
Milk Thistle and Acidophilus remove toxins from the body and help retard yeast build up
Wish me luck! I'll definitely post an update tomorrow from my appointment at this Fibromyalgia clinic. It's about 2 hrs away so I'll be gone all day but will get an update out as soon as I can once I return. Hopefully there will be some good news and hope for this journey to finally take a turn towards a healthier me!
Sunday, June 19, 2011
From one thing right into another.........never fails
Friday (17th) I woke up not feeling well - as the day progressed I continued to go downhill with nausea, cold sweats, chills - something was obviously going on. So after contemplating most of the day on trying to push through I finally came to the point that I just called my Primary Care Dr - they were able to get me in at 2:45........I figured it was better to get seen on Friday than to let whatever was going on fester through the weekend...turns out it was a good choice.
I had a good visit with him......he told me the sleep test I had done came back NEGATIVE - so that's good news...and bad news...the good news being I don't have sleep apnea, the bad news being we are no closer to figuring out how to make me better. We (me and the numerous Dr's I see) were hoping the sleep test would give us some insight as to why I'm always so tired and drained.......we thought for sure it would be sleep apnea and once I got on an apnea machine I would find that I felt SO MUCH better......well this isn't the case after all.
He examined me and determined I am now dealing with a sinus infection, a little dehydration and maybe another "unspecified" viral infection - he prescribed a 5 day course of antibiotics, anti nausea meds and rest........with plenty of fluids.....
While at his office I also asked him to call The Mayo Clinic referral line, to which he had no problem with doing for me. He said he would do that on Monday.....
We also discussed my previous blood work he had done for me in December 2010 and it turns our we did do a significant amount of blood work (which I knew, I just wasn't sure of the specific tests done) including the ANA profile, Lyme Profile, arthritis and many other blood tests to rule things out - of course, as always all the tests were negative EXCEPT one, my Epstein Barr Virus levels were high at that time...to which he said they always have been every time he has tested for it...........I've known this for a long time as I was 16 when I had a bad case of Mononucleosis.......which leads me of course to wonder if we should be exploring this a little further.....why of course we should!
Epstein Barr is another one of those "viruses" that has no cure, it is linked to "mono", has no treatment protocol and is something with many various symptoms and is linked to other underlying illnesses as well. So it really doesn't get me any closer to an answer as it's just a vague as "Chronic Fatigue Syndrome" and "fibromyalgia"...I told the Dr that in addition to these things, I swear there is something more primary running through me and I'm hell bent to find out what it is........aside from the untreatable viruses I've been diagnosed with - I just know it......if it turns out that this is what I'm stuck dealing with I just don't know what I'll do - I can't go on feeling like this day in and day out. There has got to be an "ANSWER" out there, an explanation as to why I'm always sick or feeling sickly and not feeling rested after a long night of sleep.
Like many others who are struck with a sudden illness that changes their entire life there are a lot of feelings that go with it. Aside from the fact that it feels like you'll never get back the life you once had, there are so many unanswered questions and dead ends it just seems hopeless at times. I know I'm on the right path to the Mayo Clinic and really hope they will be able to help.
I've done my share of research for sure and have come up with a lot of potential things that could be going on....several have been preliminarily tested and some have not - I'm going to be sure to take a list of everything as well as my own notes to the Mayo Clinic when I go so nothing is overlooked. Of course I have no idea when that will be...hopefully sooner rather than later.
That's it for today's update - just wanted to keep up on what's going on and where I"m at...today is day 3 of my 5 day antibiotics so hopefully tomorrow I'll be doing much better - today I was having some chest tightness but am feeling a lot better now in regards to that.
I had a good visit with him......he told me the sleep test I had done came back NEGATIVE - so that's good news...and bad news...the good news being I don't have sleep apnea, the bad news being we are no closer to figuring out how to make me better. We (me and the numerous Dr's I see) were hoping the sleep test would give us some insight as to why I'm always so tired and drained.......we thought for sure it would be sleep apnea and once I got on an apnea machine I would find that I felt SO MUCH better......well this isn't the case after all.
He examined me and determined I am now dealing with a sinus infection, a little dehydration and maybe another "unspecified" viral infection - he prescribed a 5 day course of antibiotics, anti nausea meds and rest........with plenty of fluids.....
While at his office I also asked him to call The Mayo Clinic referral line, to which he had no problem with doing for me. He said he would do that on Monday.....
We also discussed my previous blood work he had done for me in December 2010 and it turns our we did do a significant amount of blood work (which I knew, I just wasn't sure of the specific tests done) including the ANA profile, Lyme Profile, arthritis and many other blood tests to rule things out - of course, as always all the tests were negative EXCEPT one, my Epstein Barr Virus levels were high at that time...to which he said they always have been every time he has tested for it...........I've known this for a long time as I was 16 when I had a bad case of Mononucleosis.......which leads me of course to wonder if we should be exploring this a little further.....why of course we should!
Epstein Barr is another one of those "viruses" that has no cure, it is linked to "mono", has no treatment protocol and is something with many various symptoms and is linked to other underlying illnesses as well. So it really doesn't get me any closer to an answer as it's just a vague as "Chronic Fatigue Syndrome" and "fibromyalgia"...I told the Dr that in addition to these things, I swear there is something more primary running through me and I'm hell bent to find out what it is........aside from the untreatable viruses I've been diagnosed with - I just know it......if it turns out that this is what I'm stuck dealing with I just don't know what I'll do - I can't go on feeling like this day in and day out. There has got to be an "ANSWER" out there, an explanation as to why I'm always sick or feeling sickly and not feeling rested after a long night of sleep.
Like many others who are struck with a sudden illness that changes their entire life there are a lot of feelings that go with it. Aside from the fact that it feels like you'll never get back the life you once had, there are so many unanswered questions and dead ends it just seems hopeless at times. I know I'm on the right path to the Mayo Clinic and really hope they will be able to help.
I've done my share of research for sure and have come up with a lot of potential things that could be going on....several have been preliminarily tested and some have not - I'm going to be sure to take a list of everything as well as my own notes to the Mayo Clinic when I go so nothing is overlooked. Of course I have no idea when that will be...hopefully sooner rather than later.
That's it for today's update - just wanted to keep up on what's going on and where I"m at...today is day 3 of my 5 day antibiotics so hopefully tomorrow I'll be doing much better - today I was having some chest tightness but am feeling a lot better now in regards to that.
Thursday, June 16, 2011
A quick update and vent.....
I saw the Dr today - he was hesitant to agree to give me a referral to the Mayo Clinic but he wrote one out anyway after I convinced him that was my next stop - only for me to later find out that he will need to call it into them. So that's another call, email or visit I'll have to figure out.
My one question right now is WHY in the world do Dr's make it SO difficult to get into to see them and/or talk with them. Especially Dr's who see people with chronic health problems - don't they know that we have needs that need to be addressed sooner rather than later??
I am so frustrated and feel that I've just run out of juice in this fight.....I need to refuel though because I know there is a lot more fighting to do until I come to a point where my symptoms are being successfully managed. I have so many questions and want so many tests run to rule out other potential underlying issues - but for some reason this particular Dr doesn't want to do these tests.......I don't get it.
I went ahead and had him change my meds again to go back on the Venlafaxine (Effexor) - as I had mentioned before, in retrospect, this one seems to be the best at keeping my pain at bay and my mood at a stable point. Although a nasty med to come off of, it does it's job......I guess we live and learn. Too bad I had to endure the withdrawls of coming off it just to get back on it....I feel like I've just gone in one big circle. OH wait, I did!
One big disapointment from today's visit - I asked the Dr to run an ANA panel and he wouldn't do it - it's a blood test to check for any potential autoimmune issues (ie, Lupus, Multiple Sclerosis) he feels that if anything I could have an immune deficiency vs an autoimmune disorder or issue - I don't understand why he wouldn't run the blood test to rule out the autoimmune disorders if I requested it........I'm not happy about it. He said I might want to see an allergist for testing to see if my immune system is deficient in any areas..........now an allergist, really?
I'm at the point of extreme frustration, exhaustion and just simply ready to say screw it....I know I can't......but I need some fire back in my fight because I've hit so many brick walls I'm beginning to crumble against them. I'm trying to be strong and believe and be positive but it's so very hard right now. It seems that no matter where I turn there is that wall being put up....I get around it only to find another one...and another...and another.......
I'm going on a year now since I first got sick and all of this began......it's been a huge challenge for not only me, but my entire family has had to endure every aspect of my illness from my daily gripes to the Dr's to the bills that are piling up....to my lack of being able to work like I use to and to my daily frustrations...it isn't easy and I love them so much for staying by my side through all of this and just simply understanding. I know it hasn't been easy on them.
I did make a call to the Mayo Clinic and at this point am not sure the program they have is really what I need - honestly at this point I feel lost and just don't know what I need........I wish someone would just take me, run every possible test they can, rule out anything they can and get me on the RIGHT PATH to wellness. I've done everything I've been told to do from exercising to changing my diet and eating "right", to watching my sugar intake, to taking meds to sleeping more etc.....I don't know what else to do because none of the "suggestions" have made a large enough impact on my health to make me feel like I'm even close to where I need to be.....or back to myself prior to getting sick - will I ever be that person again??
With all that said - I have no other choice but to move forward.......onward I go, forward to the next step whatever that might be..........
My one question right now is WHY in the world do Dr's make it SO difficult to get into to see them and/or talk with them. Especially Dr's who see people with chronic health problems - don't they know that we have needs that need to be addressed sooner rather than later??
I am so frustrated and feel that I've just run out of juice in this fight.....I need to refuel though because I know there is a lot more fighting to do until I come to a point where my symptoms are being successfully managed. I have so many questions and want so many tests run to rule out other potential underlying issues - but for some reason this particular Dr doesn't want to do these tests.......I don't get it.
I went ahead and had him change my meds again to go back on the Venlafaxine (Effexor) - as I had mentioned before, in retrospect, this one seems to be the best at keeping my pain at bay and my mood at a stable point. Although a nasty med to come off of, it does it's job......I guess we live and learn. Too bad I had to endure the withdrawls of coming off it just to get back on it....I feel like I've just gone in one big circle. OH wait, I did!
One big disapointment from today's visit - I asked the Dr to run an ANA panel and he wouldn't do it - it's a blood test to check for any potential autoimmune issues (ie, Lupus, Multiple Sclerosis) he feels that if anything I could have an immune deficiency vs an autoimmune disorder or issue - I don't understand why he wouldn't run the blood test to rule out the autoimmune disorders if I requested it........I'm not happy about it. He said I might want to see an allergist for testing to see if my immune system is deficient in any areas..........now an allergist, really?
I'm at the point of extreme frustration, exhaustion and just simply ready to say screw it....I know I can't......but I need some fire back in my fight because I've hit so many brick walls I'm beginning to crumble against them. I'm trying to be strong and believe and be positive but it's so very hard right now. It seems that no matter where I turn there is that wall being put up....I get around it only to find another one...and another...and another.......
I'm going on a year now since I first got sick and all of this began......it's been a huge challenge for not only me, but my entire family has had to endure every aspect of my illness from my daily gripes to the Dr's to the bills that are piling up....to my lack of being able to work like I use to and to my daily frustrations...it isn't easy and I love them so much for staying by my side through all of this and just simply understanding. I know it hasn't been easy on them.
I did make a call to the Mayo Clinic and at this point am not sure the program they have is really what I need - honestly at this point I feel lost and just don't know what I need........I wish someone would just take me, run every possible test they can, rule out anything they can and get me on the RIGHT PATH to wellness. I've done everything I've been told to do from exercising to changing my diet and eating "right", to watching my sugar intake, to taking meds to sleeping more etc.....I don't know what else to do because none of the "suggestions" have made a large enough impact on my health to make me feel like I'm even close to where I need to be.....or back to myself prior to getting sick - will I ever be that person again??
With all that said - I have no other choice but to move forward.......onward I go, forward to the next step whatever that might be..........
Still here......still in the thick of things
Hello friends and followers! I'm still here, I haven't been much into posting an update since my last one, although there is plenty to update....... Health status is pretty much status quo although I can say the withdrawl from the Effexor is gone and I'm settling in with the new medication, Savella - although now that I look back I think the Effexor was the best medication to be on for both depression, mood and pain - as I was getting off the Effexor I noticed a considerable increase in leg pain especially at my hips after getting up from sitting down....my ankles and my knees as well - this pain wasn't really noticable while I was on the Effexor, it was only after I stopped that medication that I really noticed it and had trouble with walking most of the time.
SO what to do what to do - one reason I went off the effexor was due to it's high cost - and my son going on medications I just couldn't afford both - so I did what any parent would do and sacraficed my own health needs for that of my son's well being.
It's been about 2 months now since the medication switch and I'm just not sure what to do. The Savella has started to work as the pain in my hips, knees and ankles isn't as prominent as it was while the going through the switch over, however I definitely notice a difference in my general mood. I have an appointment today with my Dr so we'll see what he thinks. I would really hate to go through yet another change in the meds, it's so hard to go through that and I really just want to be at the point of being able to resume my regular activities with little to no pain and discomfort. Wishful thinking? Maybe.......probably.....
Research, Research and more research!
I've been looking into different options and places both nationally and locally to go to in order to get some good treatment and on the right path - locally there are a few places that treat Fibromyalgia, one of them being The Fibromyalgia and Pain Centers - however upon looking at them I was told they are not taking on new patients - so moving on from there I found the Colorado Fibromyalgia Center in Lafayette, CO - I have an appointment with them for the end of the month.
I'm also looking into getting in at the Rochester, MN Mayo Clinic for an exam and treatment. I think if anyone is going to get me on the right path to wellness they can. They have a specialized Fibromyalgia Clinic there that only takes patients on referral, so that's one thing I'll be asking for today at my appointment. I'm really hoping they can not only get me in ASAP but also give me a great head to toe exam and either confirm the diagnosis of Fibromyalgia/CFS or find anything else that could be going on and causing me all the symptoms I've been dealing with and continue to have. So keeping fingers crossed. If I can get into the Mayo Clinic then I'll be canceling my appointment at the Lafayette clinic for now. I'm sure at some point I'll have to take up care here locally as I don't foresee me being able to travel to MN every few weeks for follow up appointments. It's a starting point anyway.
If you have ever done any kind of research into this disease you will know that there is all kinds of information to be found, most of which will say that the cause is unknown and that there are many potential types of ways to treat it, some conventional, some not so conventional. Because of this, it can be tricky to find providers who treat the disease. Research has come a long way on it and is continuing to carve a trail for the treatment of Fibromyalgia. In fact, I spoke to the medical director at the University of Colorado Executive Health Program yesterday as I was looking at going to see them - he pretty much reminded me that this disease is SO hard to treat and said that his particular program was not for me. This sent me for a full day of tears..........only because it was just another brick wall put up in front of me, and I'm so tired....so stressed.....so sick of being sick! I couldn't help it and I just broke down. My poor kids and husband are enduring a lot with all of this as well. My son sat with me at one point last night and said to me "Mom, you are so strong, and you can beat this thing........I know it's hard but you just have to believe! Believe that you will get through this and get better and you will! Remember, there are people out there who beat cancer, because they believe they will" - what an amazing child - he's only 9 and has such a grasp on life.
One thing that is of a concern too is that there are other diseases that cam mimick Fibromyalgia and CFS - such as Lupus, Multiple Sclerosis, Lyme Disease, Candida infections...and the list goes on - I'm at the point that I just don't know if I truly have fibromyalgia/CFS or if something else is lurking in my body that just hasn't been discovered as of yet. Being that I am in a constant stage of feeling sick...not so much pain at this point, just like I'm coming down with the flu all the time........feeling crappy day in and day out definitely takes a toll on you....if you have this terrible disease then you know exactly what I'm referring to...if not...you just have to take my word for it and know that when I say I don't feel good....I REALLY DON'T...........
Even though you might see me out at the pool with the kids, out at the grocery store......out at a fabulous fun Slumber Party for a client.....you might see me at the Park or walking my dogs with my husband.........you might see me and think to yourself "well she doesn't look like she is suffering".....but inside and all the time I am just not what I use to be. I honestly feel, deep down, that what I have could very well be Fibromyalgia - but I also feel there is more to it than JUST that......and that's what I'm on the search for. I am on a mission and will go to the end of the world to find out what is going on and how to fix it. This is a fight that I'm not giving up on...although there are many times I just want to say "I GIVE UP" and go crawl under a rock.....it's easy for people to forget...I see it happen all the time....I've lost some friends because I can't be out and about with them....I decline going out with them because I just don't have the energy to do it. I hate it...I hate this disease....I HATE THAT I'VE BEEN PUT TO THIS CHALLENGE! But regardless of how I feel about it, it is what it is and I have to find a way to get through it, learn to live with it and find a way to be here for my family for many more years.
One more thing - I had a few people ask me if I've been juicing and sadly the answer is no - if you recall, my juicer broke, I ordered a replacement part which I still don't have as the company said it's on backorder - so I stopped juicing for that reason and the fact that I didn't notice it making much of a real difference overall.......I may take it back up if I ever get this replacement part to my juicer.....the replacement juicer I purchased wasn't cutting it so between all that, I just kind of fell off the juicing wagon.....I might just have to get back on it though - it takes a lot of will power to keep at it that I'm just not sure I have in me right now with everything else going on......plus, if I'll be traveling then that will cut right back into my efforts - so I might hold off until I get a handle on what the immediate future holds for me......
I'll post an update later after my appointment - hopefully it'll be a great update with a referral to the Mayo Clinic!
SO what to do what to do - one reason I went off the effexor was due to it's high cost - and my son going on medications I just couldn't afford both - so I did what any parent would do and sacraficed my own health needs for that of my son's well being.
It's been about 2 months now since the medication switch and I'm just not sure what to do. The Savella has started to work as the pain in my hips, knees and ankles isn't as prominent as it was while the going through the switch over, however I definitely notice a difference in my general mood. I have an appointment today with my Dr so we'll see what he thinks. I would really hate to go through yet another change in the meds, it's so hard to go through that and I really just want to be at the point of being able to resume my regular activities with little to no pain and discomfort. Wishful thinking? Maybe.......probably.....
Research, Research and more research!
I've been looking into different options and places both nationally and locally to go to in order to get some good treatment and on the right path - locally there are a few places that treat Fibromyalgia, one of them being The Fibromyalgia and Pain Centers - however upon looking at them I was told they are not taking on new patients - so moving on from there I found the Colorado Fibromyalgia Center in Lafayette, CO - I have an appointment with them for the end of the month.
I'm also looking into getting in at the Rochester, MN Mayo Clinic for an exam and treatment. I think if anyone is going to get me on the right path to wellness they can. They have a specialized Fibromyalgia Clinic there that only takes patients on referral, so that's one thing I'll be asking for today at my appointment. I'm really hoping they can not only get me in ASAP but also give me a great head to toe exam and either confirm the diagnosis of Fibromyalgia/CFS or find anything else that could be going on and causing me all the symptoms I've been dealing with and continue to have. So keeping fingers crossed. If I can get into the Mayo Clinic then I'll be canceling my appointment at the Lafayette clinic for now. I'm sure at some point I'll have to take up care here locally as I don't foresee me being able to travel to MN every few weeks for follow up appointments. It's a starting point anyway.
If you have ever done any kind of research into this disease you will know that there is all kinds of information to be found, most of which will say that the cause is unknown and that there are many potential types of ways to treat it, some conventional, some not so conventional. Because of this, it can be tricky to find providers who treat the disease. Research has come a long way on it and is continuing to carve a trail for the treatment of Fibromyalgia. In fact, I spoke to the medical director at the University of Colorado Executive Health Program yesterday as I was looking at going to see them - he pretty much reminded me that this disease is SO hard to treat and said that his particular program was not for me. This sent me for a full day of tears..........only because it was just another brick wall put up in front of me, and I'm so tired....so stressed.....so sick of being sick! I couldn't help it and I just broke down. My poor kids and husband are enduring a lot with all of this as well. My son sat with me at one point last night and said to me "Mom, you are so strong, and you can beat this thing........I know it's hard but you just have to believe! Believe that you will get through this and get better and you will! Remember, there are people out there who beat cancer, because they believe they will" - what an amazing child - he's only 9 and has such a grasp on life.
One thing that is of a concern too is that there are other diseases that cam mimick Fibromyalgia and CFS - such as Lupus, Multiple Sclerosis, Lyme Disease, Candida infections...and the list goes on - I'm at the point that I just don't know if I truly have fibromyalgia/CFS or if something else is lurking in my body that just hasn't been discovered as of yet. Being that I am in a constant stage of feeling sick...not so much pain at this point, just like I'm coming down with the flu all the time........feeling crappy day in and day out definitely takes a toll on you....if you have this terrible disease then you know exactly what I'm referring to...if not...you just have to take my word for it and know that when I say I don't feel good....I REALLY DON'T...........
Even though you might see me out at the pool with the kids, out at the grocery store......out at a fabulous fun Slumber Party for a client.....you might see me at the Park or walking my dogs with my husband.........you might see me and think to yourself "well she doesn't look like she is suffering".....but inside and all the time I am just not what I use to be. I honestly feel, deep down, that what I have could very well be Fibromyalgia - but I also feel there is more to it than JUST that......and that's what I'm on the search for. I am on a mission and will go to the end of the world to find out what is going on and how to fix it. This is a fight that I'm not giving up on...although there are many times I just want to say "I GIVE UP" and go crawl under a rock.....it's easy for people to forget...I see it happen all the time....I've lost some friends because I can't be out and about with them....I decline going out with them because I just don't have the energy to do it. I hate it...I hate this disease....I HATE THAT I'VE BEEN PUT TO THIS CHALLENGE! But regardless of how I feel about it, it is what it is and I have to find a way to get through it, learn to live with it and find a way to be here for my family for many more years.
One more thing - I had a few people ask me if I've been juicing and sadly the answer is no - if you recall, my juicer broke, I ordered a replacement part which I still don't have as the company said it's on backorder - so I stopped juicing for that reason and the fact that I didn't notice it making much of a real difference overall.......I may take it back up if I ever get this replacement part to my juicer.....the replacement juicer I purchased wasn't cutting it so between all that, I just kind of fell off the juicing wagon.....I might just have to get back on it though - it takes a lot of will power to keep at it that I'm just not sure I have in me right now with everything else going on......plus, if I'll be traveling then that will cut right back into my efforts - so I might hold off until I get a handle on what the immediate future holds for me......
I'll post an update later after my appointment - hopefully it'll be a great update with a referral to the Mayo Clinic!
Monday, May 16, 2011
Do you even understand?? Maybe this will help
My post today is all about bringing awareness to everyone who reads this blog that doesn't understand or for those of you who are like me, sick......all the time and do understand but need help trying to get others to understand you.
FIBROMYALGIA - it's not the "catch all" diagnosis I've heard so many people say it is.....believe me, if you lived even one day with it, you would "GET IT" real quick! It's so very frustrating not being able to really talk to people who don't have it and trust that they understand......understand why you couldn't get out of bed today, understand why you couldn't do the dishes, laundry or clean your house....understand that you are not lazy....but that YOU ARE SICK......it's easy for anyone not living with it to say things like "oh just exercise more, you'll be fine" or "go to bed earlier and you won't be so tired".....and the list of "comments" you make to people who suffer with this disease goes on and on.....I've heard you, I know what you say and think about people like me....people who appear to be just fine on the outside - we are suffering on the inside.
I've compiled a few videos for you to help you possibly see inside the life of someone who suffers from Fibromyalgia and/or Chronic Fatigue Syndrome....if you love someone who has been given one or both of these chronic pain diagnoses - please take the time to watch these videos, take the time to try to understand what they are going through....take the time to know that when they say they hurt, they REALLY hurt........don't be another person in their life who just brushes them off as lazy or think they are faking it.......living with this is hard, frustrating and at times feels hopeless.....give us hope and just try to understand..........
Fibromyalgia Hurts
But you don't LOOK sick
Just offer some compassion and understanding
Anyone who doubts this condition should take this challenge. We will both go for a walk but first lets get on an even footing.
As you can't see or feel my daily aches and pains then I suggest we should wrap ourselves in barbed wire before we set off. Oh and have NO SLEEP the night before.
Then we walk today, tomorrow and every day thereafter until one of us gives up and takes the barbed wire off our bodies. I can tell you now that it won't be me because you see this barbed wire that I wear does not come off! It's called Fibromyalgia and I just have to learn how to deal with it, no matter what!
Thank you for taking the time to read this blog, watch the videos and think differently about this condition that effects so many ......it's sad to know that there are still many Dr's out there who don't believe in this, many people out there who don't understand and many people that are close to people who suffer who just don't want to take the time to even TRY to understand what someone is going through.
Now let me remind you that I haven't always had to deal with this illness. I was only just diagnosed late last year after a bout of illness, after illness, after illness that finally landed me in a Dr's office and with this diagnosis after tests among tests among tests that came back NEGATIVE.........ask my family, I was SICK....I was in bed for 4 months SICK........now I have to deal with the after effects of that illness that started out as bronchitis, then pneumonia that turned into walking pneumonia......then a sudden onset of uncontrollable migraines, then constant dizziness to the point that I couldn't stand up and on and on...........it just was never ending until I ended up at the right Dr's office...........
I don't say these things to get your sympathy, but rather to encourage your compassion for anyone who has to deal with this day in and day out...for life. Fibromyalgia is triggered by various things, usually a tramatic incident or event.....mine was triggered by my prolonged sickness that landed me in the ER being tested for anything and everything to try to find out why I was so dizzy, with a migraine that couldn't be banished.
Please, feel free to share this blog with anyone who may benefit from reading my stories...that's why it's here!
FIBROMYALGIA - it's not the "catch all" diagnosis I've heard so many people say it is.....believe me, if you lived even one day with it, you would "GET IT" real quick! It's so very frustrating not being able to really talk to people who don't have it and trust that they understand......understand why you couldn't get out of bed today, understand why you couldn't do the dishes, laundry or clean your house....understand that you are not lazy....but that YOU ARE SICK......it's easy for anyone not living with it to say things like "oh just exercise more, you'll be fine" or "go to bed earlier and you won't be so tired".....and the list of "comments" you make to people who suffer with this disease goes on and on.....I've heard you, I know what you say and think about people like me....people who appear to be just fine on the outside - we are suffering on the inside.
I've compiled a few videos for you to help you possibly see inside the life of someone who suffers from Fibromyalgia and/or Chronic Fatigue Syndrome....if you love someone who has been given one or both of these chronic pain diagnoses - please take the time to watch these videos, take the time to try to understand what they are going through....take the time to know that when they say they hurt, they REALLY hurt........don't be another person in their life who just brushes them off as lazy or think they are faking it.......living with this is hard, frustrating and at times feels hopeless.....give us hope and just try to understand..........
Fibromyalgia Hurts
But you don't LOOK sick
Just offer some compassion and understanding
Anyone who doubts this condition should take this challenge. We will both go for a walk but first lets get on an even footing.
As you can't see or feel my daily aches and pains then I suggest we should wrap ourselves in barbed wire before we set off. Oh and have NO SLEEP the night before.
Then we walk today, tomorrow and every day thereafter until one of us gives up and takes the barbed wire off our bodies. I can tell you now that it won't be me because you see this barbed wire that I wear does not come off! It's called Fibromyalgia and I just have to learn how to deal with it, no matter what!
Thank you for taking the time to read this blog, watch the videos and think differently about this condition that effects so many ......it's sad to know that there are still many Dr's out there who don't believe in this, many people out there who don't understand and many people that are close to people who suffer who just don't want to take the time to even TRY to understand what someone is going through.
Now let me remind you that I haven't always had to deal with this illness. I was only just diagnosed late last year after a bout of illness, after illness, after illness that finally landed me in a Dr's office and with this diagnosis after tests among tests among tests that came back NEGATIVE.........ask my family, I was SICK....I was in bed for 4 months SICK........now I have to deal with the after effects of that illness that started out as bronchitis, then pneumonia that turned into walking pneumonia......then a sudden onset of uncontrollable migraines, then constant dizziness to the point that I couldn't stand up and on and on...........it just was never ending until I ended up at the right Dr's office...........
I don't say these things to get your sympathy, but rather to encourage your compassion for anyone who has to deal with this day in and day out...for life. Fibromyalgia is triggered by various things, usually a tramatic incident or event.....mine was triggered by my prolonged sickness that landed me in the ER being tested for anything and everything to try to find out why I was so dizzy, with a migraine that couldn't be banished.
Please, feel free to share this blog with anyone who may benefit from reading my stories...that's why it's here!
Friday, April 29, 2011
I feel like a Yo-Yo - Up....then down....constantly changing
Hello! Let me start off by warning you, this is a long update with several things that are going on - so bear with me as I ramble on about all this!
***********************************************************************************
Many people call me and one of the first things that they say is "how are you feeling" or "how are you doing" - my most common response, as many of you know is "it depends on the day and sometimes the hour" - because from day to day everything changes. One day I feel great, one day I want to just sleep all day...one day I have pain all over, etc and it's constantly changing like this on a daily, sometimes hourly basis. So just because yesterday was a great day doesn't, by any means, mean that today is going to be the same - I sure wish it did though!
In fact yesterday (4/27) was one of those "not so great" days - I was just simply
exhausted from the moment I woke up......it was just one of "THOSE" days. I went out and did a few things, met up with a friend for a light lunch, did a couple errands and after I got home didn't move off my chair. Today on the other hand has been a much better day - I even took a nice long walk this morning. I'm not as exhausted as I was yesterday and not having as much pain in my legs, although it's still there. My ankles and feet are quite sore on a frequent basis as well.
I also have been continuing to work on figuring out this sleep study I need to do - my Dr was able to hook me up with a company that does "at home" sleep studies - so instead of being a cost of $3000 this is $500 and I do it at home. The only thing I need to talk to my Dr about is the fact that this particular company is "out of network" for me which means it won't apply to our "in network" deductible - so I need to see if he knows of another company he can hook me up with instead of this one - either way I'm happy that I can do it for much less AND at home.....as of now, if I go with the "out of network" company, I'm scheduled to start it next WED and it lasts for 3 days......they will send me all the machines and sensors and when I'm done I will send it all back for them to analyze and report to my Dr. I'm super hopeful that this is just another step to me feeling better......if in fact the underlying factor of my chronic fatigue is because of sleep apnea then I should be a new person once I get hooked up with an apnea machine. I'm hopeful anyway that this is that "one step closer".............
For those of you reading this blog who might not have to deal with chronic issues please take a moment to read the story about "The Spoon Theory". It really gives a great analogy about someone who has chronic illness and will help those of you out there who don't have to deal with it and maybe just don't understand what it's like in the daily life of someone who does. I often times wonder just how many people out there think to themselves "oh just deal with it, you'll be fine" when in all reality, each day is a huge battle to function. I hope the story helps you understand a little better and helps you know that someone who has this is truly living from minute to minute and having to make decisions about their activities that most people don't. For anyone who thinks that these "silent illnesses" are a bunch of bologna, I honestly hope that this helps give you some insight.
I would love to hear back from those of you who read the above story with what you think about it.....
The medication withdrawl is going much better than the last update - I still get those weird sensations in my head but not constantly like it was, rather just a few times a day which has been much nicer. I had about a week of feeling annoyed at everyone and everything.....my poor family had to endure that nasty mood swing and for that I feel bad.....especially because I knew I was in a bad place but couldn't do anything about it. I am glad that it seems that the withdrawl period is not going to be constant and last as long as I had feared it would. The mood seems to have passed for the most part and overall I'm feeling that the "withdrawl" is lessening. I hope it lasts! The new medication I'm on, I can't really say much about just yet as I'm not sure about it. I am beginning to wonder though if getting off the old one was a smart move since I'm having much more pain than I previously had while on it - I guess it was working and I just didn't realize it was! But either way, I'm glad to be getting off it because of #1 the cost of it and #2 the withdrawl symptoms it would give even if missing even just one dose.....certainly there are other meds out there to give a try that aren't as heavy when coming off them......I actually want to give Lyrica a try...I've heard it's a good one for my condition.
On another note, my son has been on a new medication since the beginning of this month - long story short, he has had "issues" since he was a baby - we have dealt with Sensory Integration Dysfunction and ADHD since he was 1 - he is going to be 10 in July and over the past several months he has been having a rough time with his ADHD - I am not sure the diagnosis of ADHD really still fits him so we are in the process of getting another or rather a renewed diagnosis from his Dr. He hasn't been on medications for this until recently because nothing we did was helping him, he seems to have gotten worse over time and my husband and I really just needed some help with him......it is definitely more than him just being a kid trying to get his way too - definitely more. He has something going on inside his little body that nothing we could do was going to help - I'm so glad that we recognized this and got him the help he obviously needs.
Since starting his new medication he has done a 180.......at school and for the most part at home....he has had way more better days/nights than he has had bad with the exception of a few good blow outs (compared to constantly having problems with his behavior and attitude). We are pleased with the result of his medication and he is as well - he can really notice a difference too. We go in next Wed to see his Dr for a follow up and to determine what MG dose he needs to be on - we have "played with" several from 10mg to 60mg and think 60mg (out of 70mg) is where he will be, with maybe a little booster in the afternoons....we'll see.
It's really been a tough road with both of us...I have never mentioned my son in this blog only because this blog is about me finding my health, however, being that his actions, behavior and all that comes with that is a huge part of my life, at times will also effect my health - mostly my mental health!
***********************************************************************************
Many people call me and one of the first things that they say is "how are you feeling" or "how are you doing" - my most common response, as many of you know is "it depends on the day and sometimes the hour" - because from day to day everything changes. One day I feel great, one day I want to just sleep all day...one day I have pain all over, etc and it's constantly changing like this on a daily, sometimes hourly basis. So just because yesterday was a great day doesn't, by any means, mean that today is going to be the same - I sure wish it did though!
In fact yesterday (4/27) was one of those "not so great" days - I was just simply
exhausted from the moment I woke up......it was just one of "THOSE" days. I went out and did a few things, met up with a friend for a light lunch, did a couple errands and after I got home didn't move off my chair. Today on the other hand has been a much better day - I even took a nice long walk this morning. I'm not as exhausted as I was yesterday and not having as much pain in my legs, although it's still there. My ankles and feet are quite sore on a frequent basis as well.
I also have been continuing to work on figuring out this sleep study I need to do - my Dr was able to hook me up with a company that does "at home" sleep studies - so instead of being a cost of $3000 this is $500 and I do it at home. The only thing I need to talk to my Dr about is the fact that this particular company is "out of network" for me which means it won't apply to our "in network" deductible - so I need to see if he knows of another company he can hook me up with instead of this one - either way I'm happy that I can do it for much less AND at home.....as of now, if I go with the "out of network" company, I'm scheduled to start it next WED and it lasts for 3 days......they will send me all the machines and sensors and when I'm done I will send it all back for them to analyze and report to my Dr. I'm super hopeful that this is just another step to me feeling better......if in fact the underlying factor of my chronic fatigue is because of sleep apnea then I should be a new person once I get hooked up with an apnea machine. I'm hopeful anyway that this is that "one step closer".............
For those of you reading this blog who might not have to deal with chronic issues please take a moment to read the story about "The Spoon Theory". It really gives a great analogy about someone who has chronic illness and will help those of you out there who don't have to deal with it and maybe just don't understand what it's like in the daily life of someone who does. I often times wonder just how many people out there think to themselves "oh just deal with it, you'll be fine" when in all reality, each day is a huge battle to function. I hope the story helps you understand a little better and helps you know that someone who has this is truly living from minute to minute and having to make decisions about their activities that most people don't. For anyone who thinks that these "silent illnesses" are a bunch of bologna, I honestly hope that this helps give you some insight.
I would love to hear back from those of you who read the above story with what you think about it.....
The medication withdrawl is going much better than the last update - I still get those weird sensations in my head but not constantly like it was, rather just a few times a day which has been much nicer. I had about a week of feeling annoyed at everyone and everything.....my poor family had to endure that nasty mood swing and for that I feel bad.....especially because I knew I was in a bad place but couldn't do anything about it. I am glad that it seems that the withdrawl period is not going to be constant and last as long as I had feared it would. The mood seems to have passed for the most part and overall I'm feeling that the "withdrawl" is lessening. I hope it lasts! The new medication I'm on, I can't really say much about just yet as I'm not sure about it. I am beginning to wonder though if getting off the old one was a smart move since I'm having much more pain than I previously had while on it - I guess it was working and I just didn't realize it was! But either way, I'm glad to be getting off it because of #1 the cost of it and #2 the withdrawl symptoms it would give even if missing even just one dose.....certainly there are other meds out there to give a try that aren't as heavy when coming off them......I actually want to give Lyrica a try...I've heard it's a good one for my condition.
On another note, my son has been on a new medication since the beginning of this month - long story short, he has had "issues" since he was a baby - we have dealt with Sensory Integration Dysfunction and ADHD since he was 1 - he is going to be 10 in July and over the past several months he has been having a rough time with his ADHD - I am not sure the diagnosis of ADHD really still fits him so we are in the process of getting another or rather a renewed diagnosis from his Dr. He hasn't been on medications for this until recently because nothing we did was helping him, he seems to have gotten worse over time and my husband and I really just needed some help with him......it is definitely more than him just being a kid trying to get his way too - definitely more. He has something going on inside his little body that nothing we could do was going to help - I'm so glad that we recognized this and got him the help he obviously needs.
Since starting his new medication he has done a 180.......at school and for the most part at home....he has had way more better days/nights than he has had bad with the exception of a few good blow outs (compared to constantly having problems with his behavior and attitude). We are pleased with the result of his medication and he is as well - he can really notice a difference too. We go in next Wed to see his Dr for a follow up and to determine what MG dose he needs to be on - we have "played with" several from 10mg to 60mg and think 60mg (out of 70mg) is where he will be, with maybe a little booster in the afternoons....we'll see.
It's really been a tough road with both of us...I have never mentioned my son in this blog only because this blog is about me finding my health, however, being that his actions, behavior and all that comes with that is a huge part of my life, at times will also effect my health - mostly my mental health!
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