Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Fibromyalgia

Hi,

Anyone have Fibro. What are the symptoms, is that resembles AS's. Whether it is diagnosed before or after the diagnosis of AS. What treatment is being taken.

Jay

I was dx with fibromyalgia about 18 years ago. The first time I had trouble we were actually camping. We were medical Foster parents and had a baby with us that was really drug affected. Lots of holding/consoling, I woke up one morning unable to get up. My back locked up and I couldn’t quite walk. My legs were rubbery, didn’t work right etc. it went on for about a week. Tried prednisone but couldn’t tolerate it. I ended up going to a rheumatologist who dx the fibro. So mostly tender, sore muscles in my back. Major sleep issues. Couldn’t get comfortable, everything hurt. Lots of aching in my joints. The worst symptoms would come and go. Episodes I suppose. I just accepted it. Lots of ibuprofen and trying to find a way to lessen the pain. I went gluten free for a long while and I do feel it really helped. I also was given Cymbalta and it really knocked the pain down. I’ve probably been dealing with AS stuff for a long time. I’m just all blends together in my opinion. It wasn’t until I had bilateral sciatica that I got tested and for the gene. It was positive and I had a maternal relative that had it quite severely. He was a male tho so that’s why my rheumy calls it spondylopathy? Idk....I’m not sure any of this will help you, I feel it’s all a melding of the same stuff??

Hi Jay:

If my memory is correct then it was about a year after a flood that happened in around 1992 that I began to experience non-restorative sleep correlated with a back ache between my shoulder blades. I also felt like my blood was burning and joints hurt. I had fatigue and brain fog. I was experiencing something like anxiety with mild toxicity. I was also getting GI pains.

My doctor checked my ESR which I thought was strange since I believed that arthritis was for old people. I was abut 23 or 24 y.o. at the time. The doctor sent me to neurologists and a GI doctor then finally labeled me with fibromyalgia.

Many diseases have symptoms and sign overlap. And I feel that each one of those diseases has multiple causes depending on a person's genetics. So spondylopathy symptoms are diverse in each person and the causes are probably varied. A specific combination of triggers (microbial, heavy metal, etc) are likely causing different diseases in different people.

I read research articles on CFS, fibromyalgia (FM), mould toxicity, AS, etc and critical reviews of those findings. It seems that there is a battle of egos going on. For example, someone that has spent 25 years researching FM and says that two dopamine producing regions of the brain are consistently undersized in FM sufferers wont like another researcher that takes 100 FM patients and finds that 90 of them have high levels of micotoxins in them, even years after being in a wet, mouldy building. Doctors can not only be overly skeptical but down right "small"!

What I believe my early symptoms may have been, which I still have at even greater intensity, were mould illness symptoms. I suspect that I was colonized by mould after the flood and that has kept my immune system busy and suppressed all these 27 years since the flood. Mould illness is probably a misnomer for multi-microbial illness. Mould is always there but it has a large variety of thugs hanging with it.

That suppression creates opportunity for microbes that are considered common and innocuous to have an effect by them selves and synergystically in biofilms. As we get older the number of unwanted guests gets bigger. They probably are the primary cause of not aging gracefully.

A nasty partner in crime was introduced in to my head in 2013 during a scuba incident. That pain promoted me to over use NSAIDs which seemed to allow more good and bad bugs to escape from my gut and into my body. Once I realized that it was the NSAIDs that were opening the door to illness I ceased using them and continually got better for a year.

After that year it has been a down hill journey for the past two and a half years. The only thing that slows the pace is no sugar, NSD, supplementing with Mg, selenium, probiotics, vit-D, etc.

Using NSD and supplements is like constantly trying to bail water out of a boat that has holes in it. Gotta fix the holes and in my case that is to reduce the toxin and microbe overload. I am adverse to blindly treat myself without knowing what my targets are -- gram positive or negative bacteria, protozoa, amoeba, fungus, etc -- and what kind for bullets and firing pattern to use; i.e. what kind of antibiotics and dosage patterns.

I think that I had back pain between the shoulder blades because I was getting most of the micotoxins from the air at that time. When I had the scuba diving accident at age 45 I then developed inflammation in the cervical spine. Finally, after ruining my gut with NSAIDs I started to get inflammation in the sacrum for the first time and every other part of my body at high intensity. It seems that areas of spine inflammation are close to areas of high immune system activity.

What I am trying to emphasize in all my words is that I suspect most chronic illnesses are caused by undiagnised chronic infection.

I hope that helps.
Kevin

Thank you for the details provided.

You have mentioned



Can you elaborate. What are the foods you have avoided. I went on strict NSD for a year, which has not given any relief. My understanding is that diet helps for AS and RA. You have mentioned glutten free, I should search.

Jay

Hi Robin_H,

Thank you a very detailed reply.

You are mentioning bacteria / virus can be the source of some of these issues. Can infection prolong for many years. During the last 14 years, I had ups and downs with several treatment I have taken. I am still wondering, how anti TNF gave me relief when I do not have inflammation. I think anti TNF will not work for fibro.

What specialist you are consulting and what treatment you are taking.

Jay

Hi Jay,
So I’ve always had digestive problems and at one point had endometriosis. I got so tired of always being bloated and uncomfortable and thought my issues would resolve with a partial hysterectomy. It did help in many ways but not really for digestion. After testing for Crohn’s and Celiac I decided to try gluten free. I eliminated all gluten: bread, crackers, oatmeal, etc. I ate some rice, I ate pizza just made it with gf mixes for crust etc. mostly I ate vegetables and protein. Very limited fruit as I’m fructose intolerant. I felt immensely better but I can’t recall how long it took. It wasn’t a quick transition in some ways. The boating stuff resolved super fast but the joint aching and muscle burning gradually improved. I felt a lot better physically.
The hard part for me has been feeding the family food they want and me not eating the stuff with gluten myself. I don’t have much resolve when I’m in this much pain so I kinda gave up on it lately. Then it makes me feel worse. Ugh! I hate food sometimes I swear!! I’m not sure if it’s even the gluten as much as maybe all the crap sprayed on the wheat to begin with?? Idk

Hi Jay:

Sure you can have chronic, low level infections. Even your friendly microbes that are with you your whole life can give you trouble at different times in your life.

Many people harbour mycobacteria and they do no harm until something else runs down the immune system. I think Morgellon's disease is an example and possibly shows up years after a person had lyme disease.

As to anti-TNF's working on fibro... well, the anti-TNF's may have been working on something else. I recall you saying that you were on anti-TNF's but they were not doing anything for you. So it doesn't sound like you have some arthritis or chrons.

As to Fibro, CFS, and other yuppy flues, I don't know how separated they are. Doctors are still trying to understand the physiology and define diagnostic criteria. They all have much symptom overlap (and even some clinical signs) and I am sure that they are frequently used as diagnosis when doctors give up. We may find that some are really the same illness but just express themselves differently due to genetics.

I really think modeling black holes is much easier than solving medical problems.

KG

Yes and probably more rewarding!

Hi AnitaC,

Sorry to note the re occurance of problem. I think, if something works, it is better to stick with that regimen. We do not appear to have much choices. May you can go back to your old food which made you comfortable.

I do not have significant bloating issues. But certainly I used to have bloating immediately after lunch, whenever I was away, with outside foods. I do not know whether it is related to fibro.

Jay

Hi Robin_H,

I will keep in mind the point on low level infections. May be when I visit a GP sometime, I will discuss with him.

Anti TNF gave a big relief from my flare in 2007, but it never brought me to normal life. It slowly weaned off.

I consulted two rheumies recently both mentioned no issues with bone and muscle after seeing all my reports - 14 years. They have not pin pointed the underlying problem. I really had severe flare in 2003 and 2007 forcing me to bed for several months. To find an answer, I consulted pain specialist who prescribed for fibro. I still have no answer, why anti TNF gave relief in 2007.

Jay