I have Fibro or MS

[Tahiri_Veila]

I was told by my GP after a huge amount of tests, MRI's, etc, that I have either fibro or MS.  Feel free to look at my timeline to see my symptoms.  I have a couple of questions

1-Does fibromyalgia come and go in flares?  And when it leaves can it go away completely sometimes and other have residual symptoms?

2-Does fibromyalgia become dormant when you are pregnant (no symptoms)?  Does it get worse after pregnancy?

3-Does it affect your vision? balance?

4-How likely are you to present with most of the symptoms of fibro or do many only present with a few?

Tahiri

[ellende]

Hi! I was told after many types of tests that I am heathy, Except I have Fibromyalgia, Chronic fatique, sleeping disorder and Asthma. Now we have added detached retina to the healthy list. Just had surgery. Which the specialist said happens to people with fluid retension problems. Diabeties (I don't have) and Fibro being one that causes this. I Had a asthma attach 2 1/2 years ago. I was in the hospital for 2 wks. Came home with oxgen, nebulizer machine and hoards of medicine.Forgive my spelling thats another thing it seems to of effected. Coming off of steriods causes your body pain for 2-3 wks. My pain continued to get worse and worse until I was being sent everywhere I could be for tests. I have had asthma all my life. Otherwise heathy. I haven't met anyone that has Fibro like me. I keep getting worse. The Dr. said she doesn't know what to tell me or where else to send me. I have worked for the school board fo 23 years and now I have no choose but to file for disability. My doctor said Fibro doesn't get worse than when it appears and comes and goes. Fibromyalgia is an umberlla for anything they don't know and has to do with mussel and nerve pain. My x's new sister-in-law was diagnosed 12 years ago. Last year she woke up pain free and reclaimed her life. Who really knows? Diet does help, cause mentally your trying to do something. Sorry if this wasn't helpful!

[PlateletGal]

I forgot to mention to you that many MS patients have a low uric acid level. So you may want to consider asking your physician to order the blood test for you. Perhaps that will give your physicians a clue ? I do know that many CFS patients also have a low uric acid level as well... so hopefully that won't confuse things. MS & CFS are somewhat alike... I actually think that research into CFS has helped find out more about these "autoimmune" conditions. I have read that mycoplasma fermentans is the species of bacteria that is seen and probably responsible for MS, CFS, Fibro, Gulf War Syndrome , Lupus, diabetes and other conditions. source:   http://www.rain-tree.com/myco.htm



Best,

PlateletGal

[PlateletGal]

I do know I have communicated with women with fibromyalgia who were getting progressively worse.

What amazes me about fibromyalgia and CFS is that we share many of the same symptoms as other autoimmune diseases. I could have sworn I had an autoimmune disease, but I don't. I have CFS, but I also have "autoimmune problems".  For many us, at some point, we start to have a positive ANA titer. (my ANA titer is 1:640). I think Dr. Garth Nicholson does a good job explaining at how this occurs. If you would like the link... I can zip it your way via PM.

Anyhow, I thought I would also mention that 29% of fibro patients have a positive ANA titer and another 21.5% of fibro patients have a positive RA (rheumatoid factor) ! And yet many times they don't have rheumatoid arthritis... at least not yet.

One thing you may consider is that thyroid test, "tender point" testing and I would also recommend getting your vitamin D level checked because fibromyalgia and CFS patients are known to have a low vitamin D level as well.

[Tahiri_Veila]

So if I am getting worse day by day and more unable to do things fibro is not a likely answer?

[droopy56]

Hi,
     I can only answer what I know from experience, but I hope this helps:

1: Yes, Fibro flares and then goes into remission (I have been in a flare for almost a year and a half), but does not leave any residual damage, nor is it progressive. It does change, though. I'll elaborate when I answer question 4

2: Don't know. Sorry.

3:I have vision and some slight balance problems. Sometimes my eyes don't focus evenly, especially if I'm reading a book and have to look up quickly. One eye (never the same one) will focus on distance, and the other will remain fuzzy and unfocused for up to a few minutes.

When I went to my neuro, he had me put my feet together and stand that way for a few seconds; no problem, but when he told me to close my eyes, I would have fallen if he hadn't caught me. There is a medical term for that, but I don't remember it. I also have short-term memory problems.

4: You could possibly present with a few of the symptoms, and then, as your body changes, your condition could possibly change also. I have symptoms now that I didn't have a year ago, and some of my other symptoms have gone away, at least for now.

I do hope this helps.

[PlateletGal]

Hi Tahiri,

It's good to see you posting here. My primary diagnosis is CFS, so I will only answer the questions that I can and I'm sure the fibro members here will also chime in as well.

Yes, fibromyalgia suffers often have "fibro flares". Remissions of varying degrees can last anywhere from days to even years. Stress, other illnesses and changes in the weather are just a few things that can contribute to a flare-up.

To answer your question about balance & vision... we recently had a discussion about this and I will try to find the link later. Many fibro patients have some CFS symptoms and vice versa. According to Dr. David Bell, a Harvard graduate, approximately 30% of CFS patients experience clumsiness and another 75% of CFS patients experience light-headedness. Vision problems are also common in both CFS and fibro patients. Fibro patients often have trouble with fluorescent lights. Other vision problems common in fibro patients are blurred or double vision.

There is a research lab test apparently is diagnosing fibromyalgia. It is performed by a national lab  --- Red Labs, USA and they have a website. The test requires spinal fluid. (I know... yikes!)

Also, many people with fibromyalgia and/or CFS have a low thyroid. Here's the information on that:

T3 REVERSE -- "The mix of treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals due to pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3, is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions."

Kent Holtorf, M.D.  --- link to article: http://www.immunesupport.com/library/showarticle.cfm/id/4320

I hope this information is helpful !

~PlateletGal