Fibromyalgia

[Allyjbrown]

Does anyone have Fibro? I think i may have it, I have had cfs since i was12 now im 30..but in the last few weeks i can barely move from pain in joints,bones and muslces,my joints click, i bruise and my hair is falling out. my knees give way and i fall over...Im not coping and iv seen my dr and im having a load of of blood taken...just looking for info and what other people experience and know..and what they do for pain...thanks

 

[Dainty]

I'm sorry you've been undergoing so much, Ally.

I was diagnosed with Fibro at the same time I received my official CFS diagnosis. Some years later I went on to see Dr. Wood, a well known rheumatologist and researcher specializing in Fibro, in fact from what I heard he only sees fibro patients. His gentle examination left me in agony.

My experience has been always in pain, pressure makes it worse (even the pressure of laying on one side for too long, and the pain wake me up) and some days are worse than others. At times I had weeks on end where my pain never drops below a 7 on the scale of 1-10. I ended up resorting to narcotics for the nights when the pain was so severe that I'd otherwise spend hours yelling and moaning, unable to even sit let alone lay down for the increase in pain. It was several years before I had effective pain management through drugs, which enhanced my quality of life dramatically.

Learning meditative techniques that bring down my nervous system from a sympathetic state made a massive difference - I was no longer compelled to take the drugs, and within two months of learning it I was experiencing windows within which I wasn't in any pain at all. Oh, that was such a victory for me!

Cranial osteopathy identifies and addresses the root of my pain, which is areas where nerves are compressed, bloodflow is compromised, etc, and within 3 months of treatment it was becoming rare for me to experience any pain at all. My osteo can feel with his hands where there are structural issues affecting nerves and can relieve it. I have never experienced pain from my osteo (DO)'s touch, but I have from many massage therapists, chiropractors, etc so I'd recommend getting a very experienced one if you do go that route.

I now rarely have a day or two where pain is at a 1-2. Though there are a few non-fibro sources of pain, I've been mostly pain-free for about 6 months and I do not believe I would currently match the criteria for Fibromyalgia.

Hope that helps.

 

[nanonug]

Does anyone have Fibro? I think i may have it, I have had cfs since i was12 now im 30

It is my opinion that ME/CFS is nothing more than undiagnosed Mast Cell Activation Disorder (MCAD). As fibromyalgia may also be a manifestation of MCAD, the two coexisting together is more probable than not.

 

[Sallysblooms]

I hope the doctors get good tests done. Make sure they know how to test thyroid.

 

[Mya Symons]

This is just my opinion, but I don't think Fibromyalgia is a disease or a syndrome in itself. I think it is a symptom of something else going on with the body. In particular, I think it is a symptom of an immune reaction to something crossing the blood brain barrier and the resulting oxidative stress. This is why you see higher rates of Fibromyalgia in persons with other autoimmune diseases and with certain viruses like HTLV, HIV, and Hepatitis. I also think certain herpes viruses can cause the immune reaction which then triggers fibromyalgia. Coincidently, all the viruses in which you see higher rates of fibromyalgia and herpes viruses can cross the blood brain barrier or effect the the blood brain barrier in some way (i.e. hepatitis

infects the endothelial cells of the blood-brain barrier). ​

So, if a person with CFS also has Fibromyalgia, in my opinion, CFS would be the disease and Fibromyalgia would be one of the symptoms. And, Fibromyalgia is a different kind of autoimmune disease directly related to something crossing or effecting the blood brain barrier. Again, this is just my opinion.

Whoops. I forgot to answer the main question. Yes, I have Fibromyalgia also. It has been kicking my butt for about 13 years now.

 

[SickOfSickness]

Yes, it seems common with ME/CFS.

I know people with Fibromyalgia who don't have ME/CFS too.

 

[Sparrow]

I got a ton of joint pain, muscle pain, and clicking/cracking joints when I had my most recent big crash. But those symptoms went away or diminished greatly, so I don't think it was Fibro (and as I understand it, Fibro is sometimes more of a nerve-type pain whereas joint pain is more of an ME/CFS thing). I tend to think that it had something to do with other issues as my body tried to adapt to the dramatic overall worsening in my health.

It's interesting to hear that somebody else has had the clicking joints thing. I felt a bit on my own with that one. I couldn't figure that one out, as it happened all at once (first my shoulders and then everything), before they could have developed any problems from disuse. I was guessing maybe either something to do with loss of muscle strength (so the muscles weren't able to hold the joints together normally), or possibly something to do with changes in fluid levels in my body (since I know my blood volume likely dropped like crazy, and I was chronically thirsty).

Some of my pains turned out to be related to food allergies/sensitivities. In particular, coconut oil was a bad thing rather than a good thing for me, as it turned out. Not sure if the other pains went away because of something I did (I take a lot of supplements, and some of those could have affected them), or just faded away as my overall condition improved. It may just be extended rest that fixed them.

I definitely sympathize, though. There was a period where I had to bolster my limbs up a weird angles because that's where the pain was the most bearable, but it was always there and really difficult to endure. Much sympathy for you, and hugs if you'll take them. I really hope that yours resolve quickly.

 

[taniaaust1]

There are various kinds of pain issues one can get in ME.. not just fibro. Thou you probably do have fibro as it is so common in ME.. I suggest to check the following out on fibro diagnoses and the actual fibro tender points are on a diagram on page 2 http://www.webmd.com/fibromyalgia/guide/fibromyalgia-tender-points-trigger-points

I used to have to sleep with a pillow between my legs when I was sleeping on my side..as otherwise that fibro trigger point by the knee would really hurt if one leg was pressing on the other leg.

I had severe fibro for the first few years of the ME but then it went away when my symptoms (all the virally ones) changed.

 

[voner]

The WebMD reference this misleading. The definition of fibromyalgia has been changed by the THE AMERICAN COLLEGE OF RHEUMATOLOGY. The presence or specific location of tender points is no longer necessary. This change came along a couple years ago. Here is one of many references about it:

http://www.fibromyalgia.com/articles/item/26-criteria-new-2010-criteria

When I read the first few paragraphs of this description of the definition, it seemed to me that the definition is diffuse and Vague....... Without biomarkers, definitive medical tests, etc.........hmmmmm Sounds familiar...The similarities and differences of fibromyalgia and ME/CFS Is a quagmire.

In my opinion, fibromyalgia became known And accepted by the public and the medical community when pharmaceutical drugs were developed approved for the treatment of it, and thus the massive advertising of the drug and fibromyalgia by pharmaceutical companies dramatically increased awareness.

I also think that would be a benefit of FDA approval of a pharmaceutical drug for the treatment of ME/CFS. Even if its effectiveness was very limited, like the drugs in fibromyalgia, there would be an acceptance and awareness of ME/CFS due to the publicity provided by the Pharmaceutical company advertising.

 

[taniaaust1]

The WebMD reference this misleading. The definition of fibromyalgia has been changed by the THE AMERICAN COLLEGE OF RHEUMATOLOGY. The presence or specific location of tender points is no longer necessary. This change came along a couple years ago. Here is one of many references about it:

http://www.fibromyalgia.com/articles/item/26-criteria-new-2010-criteria

thanks.. I had no idea about that.

In my opinion, fibromyalgia became known And accepted by the public and the medical community when pharmaceutical drugs were developed approved for the treatment of it, and thus the massive advertising of the drug and fibromyalgia by pharmaceutical companies dramatically increased awareness.

I also think that would be a benefit of FDA approval of a pharmaceutical drug for the treatment of ME/CFS. Even if its effectiveness was very limited, like the drugs in fibromyalgia, there would be an acceptance and awareness of ME/CFS due to the publicity provided by the Pharmaceutical company advertising.

yes I agree that probably would be so.. if they had drugs they knew which worked for ME/CFS, the drug companies would start pushing them and this illness. Thou I do wonder if they then would also try to keep the ME/CFS definations as broad as possible so that may people trial the drugs... more profit for them (something like that could of caused the FM diagnostic criteria to be broadened).

 

[valentinelynx]

Yes. My fibromyalgia symptoms started approximately 2 years after onset of the initial illness with the ME/CFS symptoms (which was in 1993). Prior to the FMS symptoms, I had post-exertional malaise, sore throats, stiff (but not necessarily painful) hands, mild cognitive difficulties (very lucky there), new onset allergies to seemingly everything, very low energy, and a whole lot of denial. The joint and muscle pain (and particularly hand pain) started in 1995 mild and has gotten progressively worse over the years so that it now almost more of a problem than the other symptoms.

 

[taniaaust1]

The following fibro article on Fibro Treatments (there is also currently a fibro poll there) is at http://chronicfatigue.about.com/b/2012/10/31/fibromyalgia-treatment-most-common-meds.htm

 

[Shell]

I was dx with Fibro long before I got the ME dx and now POTS (most likely hyperadrenergic or combo).
Research is building up since the 1990s to show that fibro is a form of Dysautonomia and as nanonug points out MAST cell disorder.

While the chances that FMS is part of what's happening to you - the hair falling out sounds like low thyroid as well.

For pain I take Amitriptyline 50mg nocte. I use a pillow between knees and ankles and have arthtritis gloves for my hands. I would look into any of the stuff that people with arthriritis use because it helps the pain.
Dark glasses help with the photosensitivity and horrible neck and head pain.

I was tested recently for RA just to be sure it wasn't that. You might want to be tested for other stuff too such as lupus.

My Fibro has worsened over the years too. I am really sorry you are struggling so much with pain. It is bone grindingly exhausting not to be on top of the pain.

I use over the counter migrileve when it notches up above copable with. However this is a risky approach as is doesn't mix well with Ami so if you are going to experiment take them at least 8 hrs apart.

I hope you get some sensible answers and help soon.

 

[Sallysblooms]

Have you taken the supplements for mitochondria, Alpha LIpoic Acid together with L Carnitine for the muscle, magnesium, Co Q10, D ribose etc?

 

[SaraM]

Dairy,salicylate and histamine free diet is the key for me.

 

[taniaaust1]

For pain I take Amitriptyline 50mg nocte.

To care anyone considering Amitriptyline.. esp if you have IBS-C. Amitrip has an physiological effect of slowing down bowel peristalsis (affecting function) and in my case a short term (only a few weeks), low dose trial (20-50mg) of it caused me to end up with a bowel prolapse due to worsening the IBS-C. Its taken approx 5mths of seeing bowel specialists and using various things, for my bowel to recover from its worsened state. (I almost had to have surgery). Another at this website ended up with a permanently paralysed bladder from it.