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Questions for Dr. Pellegrino - Newly Diagnosed With Fibromyalgia - Have Felt Horrible for 14 Years...
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albatross posted:
Hello,

I have been procrastinating joining a support community because I never knew what was wrong with, but I just knew I didn't feel good...

Yesterday, after a few visits since retiring from active duty in October of 2010, my PCM at the VA Clinic did an exam, and diagnosed me with Fibromyalgia. I am still not sure how to feel about that because I was always under the impression that a "syndrome" is not a real diagnosis and is not really recognized. It just means that you have a whole bunch of symptoms that can't be explained, so we need to call it something so you will go away... I question the credibility of the diagnosis, even though I do have the symptoms, and everything else that can be ruled out has been.

I had Mono in 1992, and was infected with a severe case of Epstein Barr Virus in 1998. I have been telling people and doctors for years since then that I have never felt right again after that, and that was when my symptoms started and just began getting worse.

I am a 23 year military veteran, now retired and 44 years old. My symptoms:

Severe fatigue not explained by other conditions.

Memory or concentration trouble

Muscle pain

Multi-joint pain/burning without swelling or redness

Unrefreshing sleep

Exhaustion after physical or mental activity

Mood changes/irritability

No one has been able to help me. I firmly believe that there has to be a link here between the Mono/EBV and FM, but I can't find any supporting documentation or studies to confirm this.

All I know is that my quality of life is degrading more and more every year, and I am so tired of being tired, and hurting with that feeling of intense sleepiness that makes it so hard to concentrate... I go to bed and wake up feeling like I haven't slept, I wake up often at night and if I sleep too long even though I feel like I could sleep for days sometimes, it makes the fatigue and pain worse.

I have had significant service related injury to both of my knees, and a have had a total of 3 surgeries on each knee (2 scopes with debridement, and patella re-alignment), but I am still left with moderate to severe patellofemoral pain due to both my kneecaps not having any natural padding left and causing pain when the patella rubs against the femur. This is not correctable with anymore surgery, and my knee joint is ok, so that along with my age rules out knee replacements. I am stuck with pain management to control the pain so I can continue to work full-time. This medication also helps with the FM pain, but the fatigue still makes me miserable.

I take Flexeril and bedtime that helps some with the pain and allows be to get a little more sleep. My pain medication that I have been on for quite sometime is Vicodin. I tried the longer lasting 12 hour pain meds, but I did not like the way they made me feel and the fatigue which is already bad, it made worse.

I take a multi-vitamin, Vitamin C, Vitamin B-50, Garlic, Flaxseed daily. I also take Panax Ginseng, but not everyday as it raises my blood pressure that I take meds for.

I see some other medications that are mentioned for helping with fatigue, but I am not keen on taking an anti-depressant when I am not depressed. My symptoms are physical, and the sleepiness is what I am having a really hard time with.

What meds that are discussed relating to FM can truly help with the fatigue part? If I could deal with this part a little better it would be easier to cope with everything else...

Thank you!
Reply
 
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foreversore responded:
Hi, and welcome. If you haven't already ask your doctor to have your Vitamin D level checked as many of us are Vitamin D deficient. I might also add that what works for one person won't necessarily work for another.


Having said that, my rheumy has me on Savella for pain. I am still fatigued to a degree (still need a daily nap) but I feel a bit more clear headed than I was before. I currently take 25 mg a day, but I am slowly increasing my dose as prescribed by my doctor until I can get better pain relief.

I'm sure others will chime in sooner or later with other ideas that are helpful to them. Maybe you can pick and choose a few options and find what works for you.
 
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Anon_10089 responded:
Hello-

Have you researched Chronic Fatigue Syndrome. That is often linked to prior illnessess, like mono or Esptein Barr. The other aspect of your problems that caught my attention is the intolerance for exercise.

CFS and FM have many overlapping symptoms and it is possible to have both. But I'd research CFS if I were you.

People with FM are given antidepressants not only for depression. The same chemicals that affect mood, also affect sleep and energy. So while you're not depressed, an anti-depressant can help you get better sleep and have more energy.

For fatigue, some people take low doses of ritalin. There are also drugs for narcolepsy that some take, Nuvigil or Provigil.

It takes awhile to get the right meds. It is often a process of trial and error so I hope you can get some relief soon!
 
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albatross replied to foreversore's response:
Thank you! I don't believe I have ever had my Vit D checked. I will ask about that too. I will look up the rx you mentioned.

I appreciate your comments!

 
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albatross replied to Anon_10089's response:
Hi! Thank you for your positive comments! I have been confirmed with Chronic Fatigue as a symptom, but I did not do myself any justice by saying that I had good days and bad/worse days, and that I was dealing with it. I have always indicated that the way I am feeling began after my bout with Epstein Barr, which was 14 years ago. My new Dr. seems to be much more in tune with things. One of the diagnosing criteria for CFS is constant, unrelenting and debilitating fatigue for 6 months or longer... Yes, it has been 14 years, and yes I have fatigue all the time, but I have miserable days, and I have days that I have pockets of 2-3 hour time frames where I feel ok, so I guess I didn't "qualify" for that diagnosis... My new Dr. tends to equate FM with also having CFS... Interesting how it just depends on the Dr. as to what diagnosis you get huh?

 
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angelldakota responded:
Hi Hun... Welcome to our group... We like to call us all family... So welcome to the family... We can't take all the pain away but finding the support we have lived without for so long helps us deal much better with it... I am a hermit at heart... but when it comes to someone elses needs I am always right there... I have trouble sometimes asking for help but here I have found it a lot easier... Here I have found family who understand me and deal with my disappearing lol...

I know that you too will find what you need here.... the best thing to do is to read up as much as you can about FM... Knowing it better gives us a better understanding of ourselves... And to the right of this is a section called "helpful Tips" click on ~FM TIPS - LIVING W/ FM - TOOLBOX ~WELCOME NEWCOMMERS~ there you will find things that members have written about to help deal with FM... It is something I read over and over to remind me there is help out there and within myself... And there is help here...
FM and Chronic Fatigue Syndrome go hand in hand a lot... And I was like you at first I questioned the credibility of the DX to... for the most part many Dr's still don't recognise FM and don't understand it... I have finally got a team of 6 Dr's in agreement that it exists lol... Took me a couple of years to find them tho... There was always one or two that thought it was a pretty name for mis-understood symptoms... lol... Well,,, with only half my Dr's in agreement about FM I found myself the one being misunderstood... But I can honestly say it is easier to deal with and accept when I found the 2 drs I was missing lol... Look for an understanding caring Dr who believes in you and you have one step ahead of yourself... I hope you have already found that Dr...

And yes check your vitamin d as if it is low it can cause more pain... mine is within normal range but low normal so I take vitamin d... I also have my b 12 checked for it being low can cause lack of energy and more fatigue...

I hope you feel welcome and understood here as I do... And please keep coming back... Believe in yourself and accept the new you... Our world is much easier to live with then... Acceptance is a minute by minute thing for me more then not... but it is attainable... and the peace you find is immeasurable...

take care... love... Jan/Dakota
When it Rains... It Signifies Life... There is Hope... It Strengthens My Soul... And Brightens My Spirit... Think Of Our TRIALS in Life as RAIN...
Written with love by Kelly and Jan
 
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albatross replied to angelldakota's response:
Angelldakota,

Thank you! That means a lot!
 
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foreversore replied to albatross's response:
I had my Vitamin D checked because of Mimi's gentle insistence and I was found to be severely deficient. I take an OTC Calcium D supplement (per my doc's recommendation) that gives me 800 IU of D per day. At first they had me taking prescription Vit. D at 50,000 IU once a week for 3 months. After 3 months my level was up to a low normal so now they have me take the OTC supplement and an Rx od 1,000 IU per day of Vit. D and I am almost due to have my blood levels rechecked.

I was also deficient in B12. I take a 2,000 mcg OTC supplement daily as per my doc. For the first 4 weeks I had to go get a B12 shot once a week, now I only get it once a month.

I also have sleep apnea and have been on a CPAP machine for the last 3 months. My docs were blaming these 3 things for my fatigue but now that they are being addressed I still don't notice too much improvement in the fatigue. It may be because they have yet to address my insomnia...Its all trial and error and I am still working on it. It may take some time but have patience with the process.
 
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dollbug replied to foreversore's response:
Hello.....I just wanted to comment on your post....MiMi in NC....as you know I have made it *my mission* of trying to make sure that everyone is at least *aware* of how important Vitamin D level is...I did this a long time ago...when I found out just what a difference it made in my pain level....

I am sure that some FMers thought I had lost my mind....as I still continue to voice my concern about Vitamin D....but I think it is well worth people's time and effort to speak to their doctors about this...\

I also wanted to say that I have not found anything (yet) that has actually helped my chronic fatigue....I do hope some day that some one will figure this out and let us all know what might help us with it...my doctor says there is nothing out there....I still find this really hard to believe though..

Sleeping problems....it is so very important to try to find something that will help you cope better with your sleep...it makes such a BIG difference in the way we feel...as I have been there, done that...and I still have problems every now and then...it seems like the least little thing can set my sleep pattern off...and then it is almost impossible to get myself back on schedule of getting enough sleep...I sleep in a recliner, on top of pillows...(not by choice though)...I do this to keep my pain level down...

I truly do not think the Vitamin D has anything to do with the fatigue....

It is a good idea to do your own research about Vitamin D....I think some of us just can not seem to get our levels where they need to be and keep them there...this seems to be my case....don't exactly understand why though.
I do know that it took me well over a year to get my levels back to the *low range of normal*....

Take care and thanks for sharing this...


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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flowerp9358 responded:
hey albatross, I feel your pain and frustration. I am a 53 year old woman who was told i have fibro about 6 months ago. I have tried 15 nsaids and finally I found a medical doctor who prescribed Savella. Wow what a difference it has made in my life. This drug is in the antidepressent family and believe me when I tell you that I did not think I was depressed. This drug has been a life savior. I can sleep at night and I wake up with less aches and pains and a better attitude. With fibro you have to understand that you may wake up feeling like you can conquer the world. And within a few hours you don't feel like doin anything. I have learned to slow down take my time and this medication allows me to slow down and enjoy things.God Bless and I hope this may help you.
 
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Doris042 responded:
Hi, I have had and have every symptom you mentioned, and have heard everything they have to say about it not being a diagnoses well thats all because they know it is something they just don't know what. I also had mono and in my research many years ago had read there is a link between the two, if I can find it again I will let you know but to sum it up for you to be able to deal with this is a big life change, stress was a Big factor in causing the symptoms, I had to slow my life down alot, I do a little, than rest, than back up, and I had insomnia so my pain would be worse from not having sleep. I am about 17 years in and it is better because I know what triggers it, I eat better as far as meds they can always change because something that worked can stop and than you have to try something else it is all guess work , I still have bad day's but you do learn it. I feel it's all the chemicals in our food and surroundings that has alot to do with it.. Best wishes hope everything works out for you..
 
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albatross replied to flowerp9358's response:
Thank you! I will ask my PCM about that!
 
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albatross replied to Doris042's response:
I appreciate the advice...Yes, I have plenty of stress in my life too, but don't we all?? Thank you!


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