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Fibromyalgia and MS
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tabbybrn posted:
Has anyone been dx with fibromyalgia? I heard alot of ppl with fibromyalgia end up being dxed with MS also. Anyone know if this is true?
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judybird64 responded:
Hi again, tabby,
Yes, I think that is true, but a lot of people going through the diagnostic process for so many autoimmune diseases are often first dx'd with fibromyalgia because of it's diffuse nature and involvement of pain and sleep problems. Not to say that they don't have it, but it can be a chicken/egg thing. I have been being treated with the current fibro treatments as general pain management tools and it does help, so it can't hurt to look into it. I absolutely do not think that one is predictive of the other, though, so I wouldn't worry too much about it in that way.
Hope that offers you some help!
Judy
 
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hackwriter responded:
Hi, Tab,

Yes, Fibromyalgia is often diagnosed first. Though MS and Fibro share some common symptoms, Fibro, unlike MS, does not cause brain or spine lesions and does not damage the central nervous system, nor will it cause o-bands to be present in the spinal fluid. In the clinical exam, Fibro symptoms typically present bilaterally (there are, I believe, 11 pain points they check), while MS usually favors one side or the other in the early stages.

Kim
 
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BgrMom2 responded:
I too was diagnosed with fibro about 3 years before being diagnosed with MS-hard to say if it was accurate for me or not....
 
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Margieferr responded:
I think my doc has diagnosed some such (fibromyalgia) and prescribed Lyrica for it. The muscle pain has been an issue for years, but the prescription does make it go away. I have had MS for many years (first RR, now Secondary Progressive) and I often wonder if my pain is MS or Fibro -- hard to tell!
 
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snick440 responded:
I have both Fibro and MS.
 
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lisaf69 responded:
I was diagnosed with MS July of 2005 and was diagnosed with Fibro in September of 2006. Until I saw a pain specialist in 2006, they thought the pain was just part of my MS, but how untrue. I live with pain all the time. Heat causes total shutdown of my body but cold causes pain from the Fibro. No relief unless I take strong narcotics and only take those if I am having an OMG type day as do not want to be addicted. I am not sure if they relieve the pain as they knock me out. I would give my right arm to have a week with no pain and to walk again.
 
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VitaminDman responded:
I have ppms, and have stoope the progression of the disease (no lesion activity) by raising my vitamin D blood level to between 100 and 150 ( about 15,000 IU/ day) there are no reported side effects at this level. During my research, I also learned that fibromyalgia can be controlled with this kind of vitamin D level. do some research on the internet - google "vitamin D fibromyalgia", read the literature, and make your own decision, but I firmly believe it will help, if not stop, both conditions. you can look at my MS reseach at www.vitamindmscure.com. Best of luck.
Jim Dyer
 
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littlebits516 responded:
I have had MS since 1990 and I was just diagnosed with fibromyalgia this past January. I think I must of had it a lot longer, but to finally have a doctor diagnose it is another thing. I will tell you having started taking Lyrica has been wonderful. It has really helped. I have just had two arthriscopic surgeries, so becoming pain free is one of my main goals. I'm not sure if it's a common occurrence for MS patients to have Fibromyalgia or vice versa, but I belong to MS group, and a lot of us have both.
 
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mwmarmmwm responded:
Yes, first MS and then fibro. Your entry is first time I've heard of others with same combo. mwmarmmwm.
 
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widawn responded:
I can't say for everyone, but I know that I was dx'd with Fibromyalgia in 95 & then MS in 98, and my sister followed the same (first FMS, then MS) and I know of at least 2 others from one of the blogs I post on. I personally believe that my symptoms are one and the same, but in 95 and 98 even, doctors didn't believe MS caused pain - for me my biggest and most disabling symptoms continue to be pain and fatigue and today it is fairly accepted that MS does cause pain, at least among the MS'ers I talk to.
 
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mykal1957 replied to lisaf69's response:
Hi Lisa,

I know you do not want to get addicted, but part of this is learning about pain management. I too have concerns about addiction especially since it is so prevalent in my family. As a teenager and young adult, I had substance dependence issues. However, in light of this, it is important to stay on some regiment regarding pain medication.

I was diagnosed with MS in 1988 and Fibromyalgia in 1994. I am still ambulatory and walk with one cane. My progression with MS has been very slow but the fibromyalgia has been crippling. Lyrica saved my life. I am now almost pain free except for minor neuropathological issues thaty have occurred because of nerve death. Part of the aging process with MS and Fibro, so I have been told.

Please hear me out, I am no doctor, well I'm a psychologist, I definitely have an idea of what you are going through regarding the medication. If you get on a daily regiment of medication, you will feel much better. I hate to use synthetic narcotics, I really dislike using regular narcotics, but I am not even on the highest dosage of lyrica and it has helped me significantly. I take it three times a day. Now, there are some considerations you need to think about.

1. In the beginning you may need to give up some control over driving a car until you become used to the medication.

2. You may find that the medications prescribed are too strong, You may need to talk with your doctor to adjust dosages and in most cases, you do acclimate to it, (well most people do).

3. Talk with your doctor about what you are going through. Remember you are not alone here, there are many of us dealing with chronic pain and what's called "dual diagnosis" (MS and Fibromyalgia).

4.The more you learn about MS and Fibromyalgia the better off you can advocate for yourself. No one is going to take care of you throughout this, so you need to become your own advocate. Learn as much as you can about therse diseases here on-line or through the different national organizations.

I have lived with chronic pain that at times was so bad, I wanted to die. But lyrica helped me with it and it is now manageable. Like I said my results may not be the same for you and I do not want to give you false hope, but try to find a medication regime that can work for you.

I know this is long, but your story touched me and I can relate to it. hopefully, with the help of your doctor, you can find a solution. Are you in contact with the National Multiple Sclerosis Society or The National Fibromyalgia Organization? They also have a lot of information that can help you. I believe you can go to nmss.org I think. If not, do a search for National Multiple Sclerosis Society. I volunteered for them for many, many years working with our government to recognize people with MS and now Fiibromyalgia.

I hope all this has at least provided you with some information.

Peace,
Mykal
 
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fortywhat2 responded:
I was diagnosed with PPMS in 2008 and Fibro many years prior.
 
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mclean11 responded:
I was dx with MS 4 years ago. I wanted to eliminate any other reasons I was having pain in my knees and arms so bad, so I went to a Rheumatologist to be sure I didn't have RA - he tested and said I didn't but he squeezed different areas of my arms and legs, etc. and told me I have Fibro. I had been taking Lyrica in the morning but he said to double it at night and add Cymbalta daily. I couldn't believe it, the pain is gone! He told me many people have both autoimmune diseases. I also have had Hashimoto's disease (low thyroid disease) for about 20 years. It is also an autoimmune disease.
 
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Salsera8 responded:
I was diagnosed with RRMS in 9/02 and later with fibromyalgia or what I think is more likely CMP (chronic myofascial pain) a couple of years later when my doctors felt the pain I was experiencing could be separate from MS. Who knows for sure? However, I do have neuralgia as well as muscle and joint pain. I have found the book Fibromyalgia and Chronic Myofascial Pain: A Survival Guide (I also listed under resources, didn't realize it was a separate tab from this discussion) to be helpful to me, as well as the related advocacy, and trigger point workbooks.


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