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

Dear All and Anyone,

I had another visit with my Rheumy today, and he said that perhaps the reason Remicade and all them other drugs were not working was that he felt that along with AS, I also have Fibromyalgia (FM). Then he squeezed and poked and prodded several of my joints that sent me through the roof, he said he was pretty sure of it. (He actually said that I no doubt has AS and have FM as a secondary disease) He also said that it is fairly rare for men, about 1 in 1000 in Germany. The internet showed about 80% women and 20% men in the US. Now I am fairly thick, but I can remember this time last year when I was not in this much pain. Then that first trial with Remicade was the absolute cure all for me. I can not define what changed at that moment as all other Remicade infusion have not worked and I get progressively worse. I can safely admit that I have had some of the symptoms of FM prior to being diagnosed with AS. Most notable is the tingling and numbness in my feet and hands. But I feel that once introduced to Remicade and perhaps the combination of drugs I have been on, could have been a triggering mechanism for FM to really kick in. I must admit that I do not understand FM very well. I can not see where I will end up at this point. For now though no more Methotrexate and I will slowly remove Prednisone from my diet. If anyone understands FM please help me to understand what it really is. I have read a lot of stuff on the internet thus far today, but I still can not get my head around it.

Thanks for all you help in these trying days

Doug

May Pain Freeness be with you!!

Doug, I was diagnosed with FM before the AS diagnosis...try visiting a site called fibrohugs, you may get some more insight into a terribly painful disease. It is my understanding it affects muscles and tendons surrounding the joints, therefore making the joints hurt too. Sometimes my skin actually hurts and I have to wear as little clothing as possible, they don't know the cause and as far as treatment well they really don't have answers to that either...best of luck toyou...hugs, DC

Hi, Doug:

Here is a link to Mercola's take on FM; it could certainly be associated with AS and have a similar genesis.

I have posted the following before, but something there might be of help to you now:
Best to You,
John


********excerpt**************
Fibromyalgia can be diagnosed from a tendency to exhibit more than a majority of 18 characteristic and distinctive symptoms. These are mostly pain sites and the type of pain at these sites. This condition seems to be on the increase, and especially amongst autoimmune sufferers.

I looked at typical symptoms and noticed that most are very similar to the effects of mixture diving when the “mixture” is not quite rich enough in oxygen. Altitude sickness is nearly identical; the effects of a transient oxygen deprivation.

The general feeling of malaise, dull muscle aches, pains at the nape of the neck, bilateral pain in hips, knees, and elbows, are all signs of lowered environmental oxygen.

Some of the medical establishment believes that the condition occurs in women at about five times the frequency as in men, and it is an especially complicating factor with rheumatoid arthritis.

Drs. Wallach and Lan, in their book “Dead Doctors Don’t Lie,” call fibromyalgia ‘adult onset muscular dystrophy (‘stiff lamb’ and ‘white muscle disease,’ too),’ and outline a treatment using supplements (selenium, vitamin E, and sulfur--bearing amino acids) and dietary restriction (no fried foods, vegetable oils, margarine, or salad dressing). This book is nearly required reading for anyone really serious about their own health, but especially if suffering with any of the conditions mentioned in this pamphlet.

Dr. Joseph Mercola has written extensively on the topics of rheumatoid arthritis and fibromyalgia, and much of what he has to say about these conditions is completely reasonable, especially since he is one of the preeminent practitioners using Dr. Brown’s antibiotic regimen to treat many cases of arthritis. I suspect that one of the first questions he would ask any new patient is how long they had been following his dietary guidelines, so that is logically the first place to start; his informative webpage, the “read me first” section. Relative to fibromyalgia, he makes positive reference to “Total Body Modification” (TBM) and provides a telephone number: (800) 243-4826. Also “Neuro Emotional Technique” (NET): (800) 638-1411. I do not know what is at the other end of these numbers, but I take Dr. Mercola’s advice quite seriously, based upon his keen understanding of RA and successful disposition of so many cases. Another physician, Dr. David Wheeler [Oregon?], is successfully treating fibromyalgia, claiming a quick cure.

Apparently, there is a component of leaky gut syndrome associated with fibromyalgia, and a product called “colostrum” has been of benefit to some sufferers.

The possibility of oxygen uptake or utilization problems in tissue deficient in certain nutritive elements is reasonably high, but there are apparently multiple factors associated with this condition. Certainly, one of the primary substances that Cayce recommended plays a significant role in conjunction with myoglobin—iodine. The “Atomidine” suggested could both help eliminate germs as well as provide this vital element, is used wisely. Many autoimmune sufferers have thyroid disorders, and the root of this is often a lack of this important mineral.

Considering that one of the effects of increasing greenhouse gasses in our environment has been to displace oxygen, and the percentage (partial-pressure) of O2 has decreased almost 22% over the past seventy five years (some have suggested a 50% decrease within the last hundred years), it is quite possible that we have not properly adapted to the lower levels. Another problem for those suffering with AS, is that we do not like to breathe very deeply, as our rib cages are often frozen or very painful (a sneeze used to feel like a grenade going off in my chest). It is possible that an abnormally high incidence of fibromyalgia in people with AS is due to sluggish ventilation. Also, people with AS have definite muscle tissue changes, viewable upon biopsy (migration of cellular nuclei away from margins). Strength is compromised, and muscle pain and soreness are common.

If oxygen is a factor, I would think that fibromyalgia would be more prevalent during winter (cold) months, while changing to higher altitudes, and amongst smokers, although their pains might not be noticed due to CO levels. Taking a quantity of some vasodilator like niacin or aspirin might ease the condition, also.

After proving to myself, through some simple experimentation, that I actually did suffer from some chronic oxygen depravation, I might construct a sort of “fishless fish tank:” Air, when passed through water is not only filtered quite well, but becomes cooler than the surrounding air. If some small portion of the water were submitted to electrolysis, the oxygen thus produced could be mixed with the cooler, water—filtered, air to cause it to remain within the immediate environment longer. The hydrogen generated would have to be appropriately vented, to avoid any references in the press to the Hindenburg. Actually, a very innocuous amount of hydrogen would be evolved, and it has a great affinity with our upper atmosphere, due to its lack of mass. The oxygen content of a large room (16’X20’X9’) could be doubled (providing for winter exchange estimates), from less than 25ml of water every 48 hours. In a 20gallon aquarium, that is about the meniscus differences. A simple timer (555) circuit could regulate the gaseous evolution and directly provide the proper (low) DC current.

Of course, there are other obvious ways to increase the environmental oxygen, such as cultivation of spider plants and other greenery. Some permanganates and perchlorates evolve O2 upon heating, but I favor plants and electrolysis. Underwater rebreather units have the capability of liberating the O2 from CO2, but they use a caustic soda and may need to be recharged.

Hi....you may want to try a website that has a lot of very informative people on the subject of Fibro. It is www.arthritis.ca Click on the site map and go to the discussion groups. Under Fibromyalgia, there are a number of very regular posts there. They are a great bunch of people much like the wonderful group here.
Good luck to you......Geri

John
What is your thought on hyperbaric chambers???In the small town I
live in,a local person started building these chambers...They are also set up
to do treatments...I see lots of out of town people coming here for
treatments,many of these people are in wheelchairs(not sure if people
have MS or what)..Just curious as to what conditions hyperbaric treatment
might be benificial for....

http://www.hypertec-o2.com/

David

Hey, David:

If I had FM that would be one of the first places I would head to, but O2 under pressure can have some other therapeutic effects, but they should be weighed against some risks. Mixture divers sometimes suffer from weird types of algae growths, and such pressures have been known to exacerbate athlete's foot conditions.

But then there's Michael Jackson...

Best to You,
John

John
The man building those chamber used to be real big on scuba diving..The
first test equiptment he built was chambers for testing scuba tanks to
recertify them...He like diving so much, had a swimming pool built with a 30
foot deep end...

I remember reading Micheal Jackson owned a hyperbaric chamber..Just
wasn't quite sure what types of ailments they were used for...Haven't
heard of any local doctors sending patients for hyperbaric treatment..Patients seem to all be from out of town...


David

Hi,

FM from what I understand, as it was suggested is chacteristic pain in certain spots, with no other clinical cause ie no inflammation, neuropathy or other changes such as muscle fibre changes that are (currently) detectable.

I've read heaps on this, and there's heaps of theories. I've noticed that many people recover with aerobic exercise and diets heavy in omega 3 minerals etc. Avoiding stress and there's an emphasis about getting lots of sun shine (serotonin and vit d?).

Some of the studies etc I remember......

1. Just depression ie low neurotxs like seretonin....(obviously the real cause?)

2. Changed pain processing within the affected persons. when they perform MRI's different parts of the brain light up to other peoples with pain stimuli.....

3. Auto immune, can't remember where bit someone thinks that and have published results........

4a. Sufferers have higher concentrations of Sub P in their spinal fluids.....The latter is being chased down and in one study Fibro sufferers were found to have a higher incidence of minor disc bulges, mild stenosis and schmorl nodes.........

4b. Substance P is not generally accepted, but it is claimed to be a neurotransmitter which is responsible for relaying pain locally, pain stimulates it and it relays pain on sometimes amplifying it espically in the spine and certain nerves.....

NB Substance P appears to be ellusive on searches of the Internet.

OH IBS/IBD often go hand in hand....

I get the feeling that this condition is a sometimes a staging point of many diseases, until a Dr makes a diagnosis from the full signs or symptons or until the underlying condition unmasks itself.

Good luck,

Dave

Wow,

Thanks everyone for all that information. It's a lot. Actually took me a few times to read over all of it. I am not too smart on these subjects so it takes me a bit longer than most. Any way I have a couple of left field theories that I have been thinking about since my Rheumy dropped this on me. I will be seeing my GP today as well to line up my drugs and will see what she thinks. Thanks again and have a great weekend.

Doug

May Pain Freeness be with you!!

Hi Doug

I have FM also. I believe it really goes hand in hand with AS. I was dx with FM at the same time as being dx with AS. There are a certain # of trigger points in certain muscles throughout your body. I believe the number is something like 16.(I could be wrong), this was when I was 23 and I am now almost 41. The doc. feels for the trigger points and he explained it like being a mass of muscle fibers all tangled up in a ball. When he presses on those points you do hit the roof. I think I had 12 out of the 16 points. Along with the pain and muscle spasms you experience extreme fatigue. My doc explained the correlation between AS and FM. In AS your joints are inflammed and fusing. Your muscles are constantly trying to overcompensate for this and in turn become inflamed, and very painful also. Non-medical treatments would be stretching, massage, warm baths. None of those helped me. This past summer my AS got so bad and the muscle spasms so horrific my doc. put me on valium. I am still on it, but a very small dose, just 2.5mg. It seems to help with the muscle spasms. The reason the remicade may not be working is that you most likely have developed antibodies against it. I was on it for 2 1/2 yrs with great relief for 2 of them and then it just stopped working. It is something that has happened to many people, so you are not alone. The next thing would be humira. It is also a TNF suppressant, but a completely human form, so one should not develop antibodies against it. It didn't work for me, but now my doc. thinks most of my pain is from all the structural damage. This has been a little long-winded. I tend to ramble at times. Hope some of this info helps.

Take care

Simone