Question: This is addressed to all of those on the lists that has RSI and have been through the mill and have got nowhere. I have had RSI for 10 years now and was contacted a couple of months ago by Anna Avino. Some of you will remember her. She contacted the group before Christmas and got me all wound up because she accused us of being complacent. Anyway through her investigations she has discovered a possible a doctor in the US who may have discovered what many people with “RSI” are actually suffering from. I must admit that I haven’t started the treatment yet, simply because I need to get various things in place to prepare for what might be a rough journey. However, having tried physio, osteo, chiropractic sessions, homeopathy, acupuncture, rest, trying to work through it, pain management, splints and everything else you can think of, I do think that there may be something in what Anna has found out.
Below is the email she sent me and, if the list will allow, a web address where people can get more information about the subject. I was going to wait before I contacted the list until I had tried the treatment myself but there are so many desperate people writing to the list at the moment and I do actually think this might provide the answer for some, if not all of us that I think that others should look at the information and see if it describes their conditions as well. If you think it’s just another hair brained attempt to exploit those of us who are desperate then just ignore it but if it can lead anyone to the path to recovery then it might just be worth a look:
“Just a brief history. I’m a reporter and lost the use of my hands two years ago. Diagnosed with whiplash then RSI.Have tried every treatment in the book, including all the top RSI experts in this country to no avail. Have spent two years thoroughly researching this situation and have discovered that many people diagnosed with RSI actually have fibromyalgia.Even when people have won in court for RSI claims, various judges have ruled that they have diffuse fibrositis – an earlier name for fibromyalgia.RSI injury to muscle and nerve does get better – all those at the cutting edge of treatment agree on this when you see them.There’s a growing weight of belief that those not getting better have beenmisdiagnosed. (One thing for certain is that most so called medical knowledge is just theory!) I remembered a bit about your (my) story but couldn’t recall all the gory details of your pain and symptoms but it has been on my mind a lot recently since Ihave started to make dramatic improvements. I was lucky/unlucky in that the pain that had been confined to my neck and arms eventually spread to almost all my body and I was finally diagnosed with the fibro, which I was then promptly told was incurable.
Further research led me to the work of a doc in the US who is successfully treating this and I’ve been getting well as a result. He has helped thousands of people get well. There is a support group of around 2,000 members in the US at present, many of whom have had RSI diagnosis in the past – carpal tunnel, tennis elbow, thoracic outlet syndrome – all of whom have since learned that they are symptoms of the bigger picture – fibromyalgia – and those symptoms have gone on this treatment. There are a group of 55 of us in the UK now who have been using this inexpensive treatment and as a result we have managed to get a pharmacy here in the UK to get us what we need. Before that we were importing the stuff individually from the States.For some reason I keep thinking of you and am wondering whether this could also be your problem. I don’t want to offer false hope or anything like that – but I know how much time and effort I had to put in to find the answers for myself and if it might just help one other person who hasn’t got the right treatment yet then I thought I’d contact you now that I know I’m getting better. ……. ”
Some of you may have had a diagnosis of Fibromyalgia, I did and when I looked it up in the dictionary I found that it meant effectively “undiagnosed pain” which is of no use to anyone but Anna provided me with a URL in which the new research of this doctor is described with an interesting description of what Fibromyalgia may actually be. This doctor has written an extremely interesting book: What Your Doctor may Not Tell You About FibromyalgiaDr R Paul St Amand and this is his web site http://www.guaidoc.com/ . Anna’s last words to me were “I leave it up to you to decide if it is worth it for you. You can do this without your doctor and without having to pay anyone anything for treatments and therapies.” The treatment is much cheaper than many of the things you will have tried and there are no known nasty side effects. If it helps anyone, all well and good, it does appear to have helped many people in the US and a growing number of people in the UK. When I have made sure that the things that I have to do can still proceed I will be doing this procedure. I have the tablets etc and I will keep you posted as to what happens to me. If you think I’m talking rubbish, ignore me.
Answer 1: my sister in law has fibromyalgia – I know nothing except that she gets pain in her hands and has to stay off work sometimes. I do know it’s a recognised condition. i also know she now wears a magnet, which I think helps
Answer 2: I certainly think people with what seems to be diffuse RSI who can’t get a diagnosis should look into the possibility of fibromyalgia. The doctor uses guaifenesin to treat fibromyalgia. Here’s a detailed account of fibromyalgia, again from nih.gov. I’m posting this partly because it seems fibromyalgia’s been called psychological (where have we heard that before?!), partly because it _is_ detailed. http://www.nih.gov/niams/healthinfo/fibrofs.htm The link below is to a letter a patient group sent to the New Yorker. NB the group specifically says it’s a patient campaigning group: here is their Disclaimer.
Please remember the information and opinions contained at this site are intended for educational purposes and do not necessarily reflect the views of the National Fibromyalgia Research Association. Only a physician familiar with your individual medical history can give you personal medical advice. People with fibromyalgia may well need a support group. (I’m sorry. That sounds sarcastic to me. I really didn’t mean it that way. — I’m not well at the moment, nor is my mother, I have a bit too much on my hands… I’ve read about the condition and others while surfing chronic pain sites on the web, I do know what people who have it go through.) If the treatment’s simply guaifenesin (I mean, with nothing else added) then that will be right subject to the nih.gov comments on side-effects — which seem to be both easily noticed and relatively rare. (Note: the comments on the web page are nothing to do with guaifenesin’s use in fibromyalgia.) I agree. Thanks for posting it.
Answer 3: There’s actually quite a lot out on the net (UK too) about fibromyalgia. As far as I know it’s well recognised, certainly I’ve seen books in the local library on it, and rheumatologists should be well aware of it. There are specific diagnostic criteria for it to be applied, but if you don’t meet them there’s also myofascial pain syndrome (a kind of catch all/doctor doesn’t really know what else to call it when you don’t quite meet all of the diagnostic qualifications for FM but exhibit generalised muscle pain and related symptoms).
The site to which you refer is a US one and like many things there is very keen on promoting its miracle cure and theory that explains everything – not to say that there isn’t something in it. I think it’s the same tack as quite a few US docs are taking at the moment, amongst them Travell and the trigger point lot. I note interestingly that he’s saying that FM, MPS, CFS and many other things are really all the same condition. I tend to take such sites with a pinch of salt, although a lot of what he says rings very true – but hey, if it works for you then go for it. He’s got as much right as any other scientist/doctor at the moment, because I can’t see that any of them have the answers yet.
I came across FM quite a while ago in my researches and on the quiet have long suspected that many of us with “RSI“, especially the diffuse type, are also suffering from FM/MPS to some degree or other, or at least symptoms that come very close, by whatever name you wish to call them. But, whether caused by/as a result of the original RSI or as an underlying separate problem aggravating the problem, I don’t know. Neither, I suspect, do the doctors.
My pet theory (totally unqualified but from experience) as it involves RSI (of one particular type anyway, bearing in mind that RSI itself covers a multitude of conditions) is that the FM needs a trigger to start it off (like the initial RS Injury)- from whence it becomes irritable muscle syndrome combined with various other bodily complaints stemming from this constant onslaught on the poor old body (or simply stress – it also seems to be stress linked, as is RSI.) It might all be one great big circle. Perhaps diffuse RSI is actually MPS by another name, but one with a known cause (work related/computer strain). Maybe we need to treat both the FM/MPS and the RSI itself at the same time (wot – the NHS treat two co-existing conditions? Flock of pigs flaps its way lazily over…)
I certainly feel that since I started using computers I have not only had the precise/locatable pain but a growing general malaise and muscle tiredness/pain, loss of stamina (etc) which I associate with the same thing – many of my symptoms fit into the FM/CFS diagnosis, but others definitely don’t and are physically detectable/causable. For instance I don’t really have the 11/18 pain points, nor the overall body pain – my pain is located to upper back and neck, mostly one sides and definitely linked to the way I sit and when I use the desk and computer at work – but otherwise it does feel as if I have FM from general body fatigue and other symptoms. Maybe it’s really MPS – but then again, if you have a muscle (or whatever )injury and are straining to work in a tiring pose and are in pain, wouldn’t you expect that to cause similar symptoms too?
Not to de-bunk this at all, and it certainly is a genuine condition for some, but isn’t the trouble that if you have a genuine work related injury it’s very easy to use FM as an underlying medical condition to take the heat off the employer to some degree? And I think most of us with RSI are pretty convinced that it’s something related to our work that’s put us in the boat. I know that the pain is brought on by what I do and how I sit/work at my job – I also know I never had it before I started using computers at work. I can go with an FM predisposition theory as it at least explains why some people doing the same job get RSI and others don’t – but then again, there’s other explanations too… I can go with RSI causing FM or similar symptoms of generally annoyed (bits or all of) body and then being hard to throw off – but I can’t go with FM being the whole answer or the whole cure if you actually have an injury/trauma – which is, of course, what RSI is. Personally I think it’s fairly easy to tell the difference by looking at cause and aggravation of symptoms.
To be practical, rather than trying to pin some medical disease label on it in the hope of a desperate cure, one reason why perhaps quite a few of us aren’t getting better (well, me certainly) is simply because our work conditions aren’t improving and we carry on doing exactly the same thing day after day and abusing our bodies and wrecked muscles/tendons/nerves/necks/wrists instead of resting and letting problems and stressed/exhausted/pain wracked bodies heal and recover. I always feel that if I could stop doing what causes it (i.e. if work didn’t hurt!) then it’s OK and I’ll recover – whether or not I have some underlying illness/disability or not doesn’t really matter if the job I’m doing is causing me to be in pain and making things worse, then that isn’t right, is it? Also, generally I’m much better at home, even if I’m doing strenuous things, and I don’t think that FM necessarily should do that – so I definitely put this down to work cause first and anything else second. Anyways, please let us know if the Guaiphenasin actually does anything. (And, by the sound of it, good luck avoiding all the salicylates…)
Answer 4: Not Travell. She’s no longer here. She died in 1997 at the age of 95.
Answer 5: I think I have it too, I was diagnosed with it by a physio who sent me to a Rheumatologist. He found that I had a connective tissue disorder “no shit Sherlock” and I paid 3200 for that! Anyway, I have since been diagnosed with Hypothyroidism and there are thought to be links between this and Fibromyalgia. I was on Thyroxine which didn’t seem to help the pain and moods I have just got a super drug “Armour” from my consultant I am keeping my fingers crossed very firmly.
Answer 6: My mother’s clinically hypothyroid. She hasn’t any “diffuse pain” symptoms, but she does get very tired. She takes thyroxine. That has made a tremendous difference to her, even though her thyroid levels are still not normal (the drug has to be introduced even more slowly and in even smaller doses — and more finely graduated — in old people, and she was only recently diagnosed). She won’t be on her maintenance dose for at least a month more.
NB: once you start taking thyroid drugs you have to go on taking them _for life_. Armour is apparently a fairly old thyroid hormone — nothing wrong with that… — I couldn’t find the difference between it and thyroxine, but I rather think Armour’s a natural hormone, thyroxine may not be.
Answer 7: I am taking Armour because Thyroxine didn’t work for me – some people need more than T4 and Armour has the cocktail for hormones I need. Also, people have different symptoms with these conditions – my mum has no pain but she has other things like thinning hair (luckily her hair is very thick) restless leg and tiredness (seems to be the catch all!) Glad your mum is better!
Answer 8: I forgot to say that my mother doesn’t have the same symptoms as you. Sorry. I also forgot to say that she, like you, has pain that is nothing to do with her being hypothyroid; and of course the thyroxine doesn’t help with that. I wasn’t getting at you. I was a bit worried that someone who didn’t know about these conditions might be unhappy if they were given thyroxine. Tiredness does seem to be the only symptom everybody who has this has; my mother doesn’t have some of the most usual symptoms and the thyroid problem was only picked up when a doctor found a heart problem (which is not serious) and ordered a whole battery of tests. So the condition is hereditary, in your case? I have to have a check for various things soon, I’ll probably ask the surgery to add in a thyroid test. Thank you for your good wishes for my mother. She still gets very tired. I’m going to ask the doctors to do a re-check earlier than scheduled.