# Am I misunderstanding Fibromyalgia?



## Feisty (Aug 14, 2000)

Hi, everyone!Debbie---I felt I needed to post a new thread after reading your last post under Weener's topic "Update".All these years (18) I have been with the understanding that Fibromyalgia involved inflammation of the muscle tissues including those tissues surrounding a joint or joints. Every Doctor I have ever been to has more or less made similar statements regarding my different complaints about all the muscle soreness, etc. The muscles become inflamed and swollen and sore; although much of the "swelling" isn't so visible from the outside.Can someone shed more light on this and help me truly understand it? Or are there so many different theories out there, that it's like----pick one?!Another question I have is about Vioxx. The Doc told me that Vioxx and Celebrex are the two newest ones and that they are not suppose to "eat away at" the lining of the stomach; therefore causing less stomach irritation. Yet, I must take it with food or I really do get a sore stomach. And the Celebrex can't be taken by anyone with an allergic reaction to suphur drugs---and that's me. So here I am, trying the Vioxx. Does it take awhile to notice a difference when taking Vioxx, or should I be noticing a difference already? If so, I'm not. I still hurt like h-ll. I've been taking it since Tuesday. And stomach problems----ugh. My stomach is very sensitive and the Vioxx is making it more so.Help!Thanks!Karen------------------There is a silent strength within each soul, and that strength is multiplied for those who remember that they do not walk their path alone. Thomas J. Edwards


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## Nina M (Feb 10, 2001)

Feisty it isn't you are misunderstanding, it's half the doctors who don't understand and won't until researchers get a firm handle on this thing. Though as one sufferer, himself a former research scientist said to me, researchers don't get into the FM/CFS thing much because it's such a minefield & practically a dead-end career wise for them. However my fibro style problems has never been treated with anti-inflammatories. One doc tried me on Celebrex just to see if it did anything, but no, nothing. Mind you nobody has treated me much with anything, usually they want to go down the anti-depressent road & I wouldn't be in that, 'cause I don't get depression. Though one sensible doc did recently suggest 'Allegron' older style SSRI, not because he thought I needed anti-depressent therapy, but because I kept waking up during the night & my neuro-muscular system was definitely shot at the time. One a night lets me sleep through, sleep gets to do its repair & maintenance job and I feel more refreshed & much better. My own tuppence worth is that for many the problem is neuro-toxins from the GI tract circulating in the system. It's a view that gets a lot of support in certain medical circles & with some researchers, problem is there are too many competiting theories with none getting to win the day as yet. However because I recently missed out on the chance to try put theory into practise with much vaunted & long awaited procedure I really should shut up on the matter.


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## Mio (Dec 19, 1999)

Hi,Nina is right! Most physicians donï¿½t know anything about FMS, and itï¿½s very frustrating. Those physicians that I talked to who know something about this disease thinks itï¿½s neurological. I think this theory is the most common one, and they donï¿½t think itï¿½s any inflammation. I was at a lecture with a expert (PhD Fhager) on FMS and it was very interesting. As you know some doctors donï¿½t belive that FMS is a disease, just something our heads. This doctor informed us about what scientist had found in FMS patients. Something that I think is interesting is that FMS patients has abnormal amount of a neuropeptide called substance P. Substance P controls our pain perception and FMS patients have much more of this neuropeptides than "healthy" people. And he said that in some years there will be a medication to regulate this. He also told us that the levels of stress hormones in the adrenal gland was disturbed and there is a medication that helps in 50% of the patients.Our amino acid levels, T-cells, thrombocytes, White and red bloodcells was generally disturbed.When they did X-rays of FMS patient the bloodflow in the frontal lobe was disturbed.Vioxx are an anti-inflammatory drug and if you just have FMS it donï¿½t do much good. Iï¿½m taking a medicin called Nobligan (I think itï¿½called Tradol in US) they have done a lot of studies on this medicin and it seems that it works well for FMS patient. The active substance is tramadol-hydro chlorid and itï¿½s basically a painkiller. I think this medicin works wonder for me./mio


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## Nina M (Feb 10, 2001)

Can vouch for Mio's point of out of whack amino acid levels etc. Had a bio-profile done few years back re; amino acids, blood lipids, urine, faeces; & yes whole system out of whack, certain amino acids at abnormally low levels, others at abnormally high levels. These particular researchers claim they can tell a persons main symptoms from their amino acid profile, and that they can identify hidden infection from the overall profile, though often the urine sample alone. It did turn out that I had two infections, a nasal staph one & H.Pylori in stomach, subsequently treated, when a multitude of the 'standard' blood tests etc., ordered by doctors kept saying all a.o.k. The amino acids, supplied through their biochemist, to help re-balance system also helped me enormously. Essential fatty acids, fish oils, digestive enzymes, probiotics are all part of their recommendations. Sad to say though all difficulties did not resolve, but it was an informative experience. Don't have their web address to hand but if you want to read about their work might be able to locate by searching under Bioscreen Australia. Studies down under also highlight the reduced cerebral blood flow, again as said my Mio.


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## Feisty (Aug 14, 2000)

Mio and Nina,Thanks to both of you!So, in other words, all the muscle tenderness and pain is not at all inflammation. It's more like nerve involvement. Today, I attended a seminar in Green Bay by Dr. Faber from the Milwaukee Pain Clinic. He practices "Reconstruction Therapy". It is an injection therapy that has been shown to cause growth of cells and tissue to stabilize and strengthen weakened joints, cartilage, ligaments and tendons. Don't know if anyone out there has heard of or tried this technique; which is also known as Prolotherapy. A Dr. Hauser in Oak Park, IL wrote the book "Prolo Your Pain Away". I read the book and even went down and met Dr. Hauser and had one treatment by him. Unfortunately, I could not afford to go back. That was 2 years ago. My insurance would not cover any of the treatment protocol and besides that, he had me taking 8 different "nutritional" supplements, and when I went back the second time, he wanted to add more. I was blown away with the $800 charge for all the supplements and treatment and told them I could not continue. They were not very receptive to that and I chose not to go back. But, I do believe there is some truth to this procedure. It was first discovered in the 1920's By Dr. George Hackett, M.D.. Unfortunately, I could not get near Dr. Faber after the seminar today to ask him if Fibromyalgia patients have benefited from his treatment. Today he talked mostly about bad knees and hips and necks and backs---where surgery was recommended to these people and instead they came to him for his approach and they avoided surgery. Dr. Faber said that Reconstructive Therapy stimulates your own body tissues healing mechanisms and promotes the body's own natural healing ability. Apparently there are several slightly different techniques that he uses---it depends upon your symptoms, etc. Another one is called Neural-Fascial Therapy using procaine and lidocaine anesthetics injected into scars, nerves and tissues.Does anyone know more about this? Has anyone ever tried this?And what about health insurance---will it pay for this? I sure wish some of those questions were answered today, but I guess the "gimmick" is to get you to make an appointment for a "free" screening to see if this techniques will help the individual. Hmmmmm, am I being suckered in or what?The website for them is: www.milwaukeepainclinic.com in case anyone else is interested in checking this out.Karen


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## Debbielee (Jun 14, 2000)

Hi Karen,Im with nina and mia---i believe FM has some kind of bacterial basis--from the gut or other.Everything ive read says FM is not an inflamatory condition.If your muscles --tendons etc... are inflamed then they would be swollen--right? Only makes sense. However, i no a few people thet do get swelling but it is more of a arthritic type.Vioxx is for arthritis---it is rough on the tummy--it is marketed as not "as bad" as the other drugs but still can do in the tummy.Karen--the Dr. dont know and there is a meriad of thereies and quacks touting a cure--just be carfull.Do you have anything else for pain? Some Dr. just dont want to treat with pain meds but it is, at the time one of the only things that work or the anti--depressants. I cant take the anti-depressents.The disrupted sleep is a biggy--i like the theory where it says the body does not get to heal itself cause we are getting the proper sleep and i think that has something to do with that P thingy they where talking about above.From my own experience--my joints feel like they should be swollen but they are not.Are yours?Take care Karen,Debbie


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## weener (Aug 15, 2000)

Hi Karen:I agree that the doctors don't know what fm is or what causes it. I've heard every theory out there and still there is no cure except meds to help alleviate the symptoms. I was told that fm is not inflammation of the muscles and unless there is already a arthritic condition present the anti-inflammatories will not help much. I've taken Naproxen and it just ate away at my tummy. My rheumy also suggested vioxx which makes me wonder why she would recommend that knowing that there is no inflammation. I think they are grasping at straws and trying different meds hoping that we as patients will find some relief. My rheumy also mentioned xylocane (sp?) injections into my chest area for costrochondritis. I think the shots numb the pain. But the absence of pain differs in each individual. I'm a little hesitant about these shots. Heard a few horror stories. The only thing that took the pain away was narcotics and that turned out to be a definite no,no for me. I was hallucinating and heart was pounding. So I'm back to the extra strength tylenol and warm baths. P.S. - Did you get my latest email?


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## Feisty (Aug 14, 2000)

Thanks Weener! Yes, I did get your e-mail. I will try to write soon.Today was a working day for me. 6 hours straight housecleaning. Have a major migraine----I always do---every single time. And my body feels like I've torn every single ligament. Why oh why? And 2 more cleaning jobs to go, this week. Tuesday and Wednesday. Ugh!! Doesn't sound like I'm enjoying it much, does it? (I'm not) Only doing it for the "paycheck"---need the money. Karen


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## Nina M (Feb 10, 2001)

Fesity, wouldn't know anything about that Prolotherapy thing. But I do think that one of the biggest tragedys in all this is the money so many are literally throwing away trying this, that & everything else, hoping against hope that it just might work. I did it, tried everything I could think of just to see if this would be the thing to do it for me. Same thing at my monthly support group, one lass is swearing that 'kinisiology' at probably something like $80 a session, is making her better. Of course nobody wants to discourage or shoot it down in flames but of all the alternate therapies & many are very good & perfectly legitimate for certain conditions, 'kinisiology' would have to be classed as a bottom of the heap pseudo-science. I don't have any clever answers butI do now focus on my GI tract with the best quality probiotics I can lay hands on like Lactobacillus GG & Yakult's Lactobacillus shirota strain, also a formula mix of rhanmosus & other strains which have been proven to survive the transit through the acid of the stomach etc.. Unlike stuff like the much touted acidopholous which does not (though it is in the probiotic powder mix). I want as many of these good guys in there as possible adhering to & coating the mucousa of the gut in the possibly vain hope that it will help reduce any toxins making it into the blood stream. Apart from that a good nights sleep seems to be making a difference to me, though it will be sometime before I pick up the vacuum cleaner again or any of those other tasks that, as you say, make you feel like every tendon & ligament in your body is being stretched & torn. And yes I am going to be 3 day stool tested again in a few weeks, this time at the "new" lab with the "very newest updated testing procedure" which the nurse failed to do and so was one of the queries put to her and which brought about my 'cancelled patient' status. She sent the tests to the old lab, and not the newer one which was getting better bacterial & pathogen identification rates. After hearing about it, my general practitioner is arranging for me.


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## Debbielee (Jun 14, 2000)

Karen i dont how you clean houses like that!No way i could do it. Isnt there something easier you could do?Weener--there are narcotics that will not cause the side effects you mentioned--i dont know what you where taking.However, a caution to those of you using tylenol on a routine basis--it is toxic after awhile---to the liver---it does not leave your body like aspirin etc...Liver function tests should be done.Debbie


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## mamamia (Jan 21, 2000)

I am with Debbie. That sleep thing is key. The muscles repair themselves during the night and interrupted sleep interrupts the process. Even with Tylenol PM, I still wake up at least three times per night. With the Tylenol PM I can fall back to sleep pretty quickly though. Otherwise, I will lay awake for an hour or more.I have had nights without Tylenol PM where I have woken up 6-8 times during the night. And when I do, I have to go to the bathroom!It's nutz!!I always heard that FM had nothing to do with inflammation like arthritis, but who knows. I feel achy and my fingers swell. The only time I feel good is when I am going on my walks. I am up to 5 miles 3x per week.I have to push to get myself started, but once I do, I'm there!!!love to all, m-


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## Nina M (Feb 10, 2001)

Oh Mammamia how terrific that you get out and do that walk, gosh five miles. I've just started getting out & walking again, usually for about 40mins. Must get myself one of those little pedimeters, see how many kilometres/miles I'm getting in, also as an encouragement to try to go a little further each time. Would you consider taking one small SSRI a night to help you sleep, it has really made a difference for me and I resisted for so long, "Nobody's hanging a depression label on me". Well nobody has and I'm getting my sleep at last. Newer ones are the 'Zoloft's' etc., but my doc preferred the older ones like 'Allegron' 'cause he thinks they do a better job. Also assured me they are not addictive like sleeping pills or tranquilisers. One a night does the trick took about two weeks to be effective and now I only rarely wake up, if so just the once to empty my bladder, I drink a lot of water. I used to do the Tylanol type thing too, only here we call it Panadiene Forte, but same thing as your Tylanol plus.


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## Feisty (Aug 14, 2000)

Tylenol PM is a no-no for me-----makes me hallucinate. Awful stuff for me to take!!! I have been taking 2 Skelaxin (muscle relaxer) and 1 Benadryl about 1 hour before I go to bed. Makes me tired enough that I can fall asleep without too much of a problem. If for some reason I don't "drop" off right away, then I get back up and read a little while until I feel drowsy. I do wake up on average 3 to 4 times during the night and each time I have to get up and go to the bathroom. My Urologist just switched me to Detrol LA 4 mg. to see if that will slow the bladder down some. The Ditropan XL 10 mg. was giving me major constipation and I had to quit taking it. Took me almost 2 weeks after going off of it before I could "poop" half-way decent again. Ugh! That was awful. So much straining and that's exactly what I have to avoid or it will wreck what the surgeon did a year ago to give me back some control (don't have much sphincter muscle left and if I have too much of a problem with constipation, the remaining half-inch of sphincter muscle will weaken and I'll loose control again and then it will colostomy time).I've just about given up on trying things to give me some relief from the Fibro. I've been there--done that so many times. SSRI's cause major depression and suicidal tendencies in me, and other drugs can give me anything from hallucinations, to stomach irritation, etc., or they just do nothing at all.I've stopped the Vioxx. Stomach upset something fierce. And it did nothing for the burning pain from the muscles. I'm a little smarter now, thanks to you guys. No more anti-inflammatory drugs for me unless they can promise a miracle.Thanks everyone for responding.I'm going to check out the Probiotic supplement thing. My gut sure could use a little more help. Does anyone have any recommendations as to the brand and dosage and where to find it?Thanks again.Karen


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## Nina M (Feb 10, 2001)

Culturelle is an internet site for Lactobacillus GG. Think it also shows areas where you can buy it in your health food store. It really would seem to be one of the best, survives transit through the gut, so many probiotics have strains that don't. Seems that some of them can even be devoid of "live organisms". Here's a website you can read some extracts from research on it; http://member.rivernet.com.au/bara/links.htm This website is about the parasitic infection G.Fragilis but you might also like to look at the info page on labs & their testing procedures. Jackie has had the infection for 7 years, sick of the medical professions ignorance she started doing her own research. Know of at least one gastroenterologist who changed his testing procedures as a result of the info she gave him and is now getting much better results for his patients. Another strain that makes it into the intestine is Yakult shiroto strain you might be able to buy it as a drink in your supermarket but it is awfully sweet & sugary. They also have freeze dried powder YakultBL but don't know if it's available outside Japan. There's another called Clostridium Butyricum but you've probably got buckleys of getting your hands on it.


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## Guest (May 24, 2001)

Regarding Vioxx - for those with IBS-D Vioxx has sorbitol in it and can aggravate the D in some people.------------------Mildred


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## BOGGS (Apr 1, 2000)

Hi everyone , This is a very good topic. I like to read other peoples thoughts one this nightmare we call FM . I have been through the samething that all of us have done . All the test AND MD after MD . I feel like all this doctors are just passing the buck . IT does my heart good to see that I am not the only one that has got the big run around . This board helps me alot I don't even know anyone who has even heard of Fibro . I come to this board for support by people that live with it everyday . The pain is the last thing that I fell before I go to sleep and the first thing I feel when I wake up . I just wanted to reply and say thank you for the topic . Take Care Pat


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## wanderingstar (Dec 1, 1999)

Karen & others - about inflammation. Have any of you had the ESR blood test? This measures inflammation in the body.I have had a few high ESR readings (well, 29ish which is too high but not as high as some), and my pain was helped somewhat by a Depo-Medrone shot, which is an anti-inflammatory steroid. So I'm thinking perhaps the pain is down to system inflammation?Another thing about muscle pain - the intense terrible pain we get after exercising our muscles (walking up the stairs for me but for others going on a longer walk) is possibly due to lactic acid build up in the muscles. This happens because the muscles are not getting enough oxygen during exercise - they are working anaerobically but are designed to work aerobically. ------------------susanIBS D/C type & M.E/CFS


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## south1234 (Jul 1, 2000)

It's funny you should mention steriods helping your symptoms. I've mentioned to my doc on several occasions that each time I've received a steriod injection or a dose pack, my IBS/MFP pain has been greatly lessened. However, when I finish a dose pack I feel like death warmed over for days after completing the pack. (Doc said always to ask for a slow taper dose pack in the future). My SED rate is occasionally elevated, but not always when I'm feeling the most pain. Another weird thing is that I feel as if my blood vessels are inflammed and tender. My doctor asked my why I felt that to be the case and I was able to show him that whenever he touched an obvious blood vessel (like on the inside of my arm or lower leg where the skin in more tranparent), it was very tender to the touch. All tests for arthritis type disorders and other autoimmune disorders have always been negative. The doc said that my observation about the vessels was interesting, but could offer no explanation for it.Who knows how many body systems this mysterious ailment effects? Hope someone figures it out soon!Blessings--South


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## BOGGS (Apr 1, 2000)

Hi everyone , I agree with all of you . Everybody is diffrent and have their own feelings on what this fibro is all about . I would like to share mine if you don't mind . I think it is a group of problems not just one . Sleep , nutrition , and immunity disorder .I take meds to sleep , I take vitiams for nutrition , and vitiams for immunity . I know that everyone my think diffrent about this . This topic is great to read others reply . I am not closed minded . Thanks for this topic . Pat


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## shrinky (Sep 14, 2000)

Hi Karen,I think most doctors still don't really know what is going on with us. I was told anti inflammatory medication won't help us so by this I take it to mean we don't have inflammation.Brooke------------------B Howes


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