Fibro facts?
Question:
Marilyn Bachmann wrote: > Sarah J Moran wrote: > > Hi all – > er > Newsgroups: > alt.med.fibromyalgia > Might want to check out the above newsgroup.
Your guess is as good as mine why this went out 3X.
Response:
Sarah J Moran <sah…@ICI.NET> wrote: >Hi all – >I have a non-computer friend that has asked me to ‘punch Fibromyalgia’ into >the computer and get some print-outs… >Since the medical know-how of the group is great, I thought I’dd ask here >first >for a good URL or two… >My friend’s wiffe hasn’t been officially dx’ed yet, but gets relief from >preednisone…what is rx of choice? > best, sahree
Sahree, I wrote a long reply to your questions, but got a general protection fault error after 1 hour of composing my reply. Lost the whole thing, so this may seem a bit more concise and less taxing for you, anyway. I am surprised that prednisone was prescribed. No one I know takes prednisone for fibro…. and I mean NO ONE. This doctor of hers isn’t a rheumatologist, is he? Just an educated guess. The goal for fibromyalgia treatment is rest and relaxation. Lack of sleep and stress tend to bring on the symptoms… so prozac and elavil are usually the first things prescribed. Some doctors go the vitamin suppliment route, too. Magnesium and calcium are often recommended as suppliments. A diet similar to the Swank MS diet is usually recommended, too. The best therapy is hydroaquatics. The arthritis foundation should have a program already set up somewhere in your area. I was/am in the pilot group for fibroaquatics, and I love it. I go to the pool 3 times a week. Not only is the exercise good for me, but the 11 people in my group have been my support group for fibro for the past 2 years. I had to take a month off, recently (because of MS problems), and I missed those people like crazy. One thing, though… fibro is rarely an unaccompanied syndrome. It usually is coupled with something else (i.e., scleraderma, multiple sclerosis, lupis, arthritis, hypothyroidism, etc.) Make sure she lets the rheumatologist know of all of her symptoms (no matter how minute she feels they are). I went for another year before the rheumatologist sent me to a neurologist and I had my MRI and test done to find that I had MS also. There’s no cure or real "treatment" for fibro… but it certainly isn’t as hard to deal with as MS. One can lead a normal life, if they get the proper amount of sleep. As the other respondent to your post said… do a web search. There is tons of stuff on the web about fibro. There are no books in the library or bookstores that will offer as much or as recent information as you will find here. Just fire up yahoo!, excite, or infoseek and print out to your hearts delight. I know that after my first surf on the web about fibro, I ended up with an inch thick stack of printouts. There’s surely a lot more about MS, of course, because it is more common. Be sure to tell your friend to get her to see a rheumatologist ASAP for a clear diagnosis. My rheumatologist made a good point that characterizes fibro exactly…. he said: When a "normal" person goes to sleep, his/her brain shuts down to a 15% – 20% activity level. When a person with fibro goes to sleep (if he/she gets there at all), his/her brain only shuts down to a 55% – 75% activity level. Kristi I asked God for strength, and he gave me Richard… the embodiment of strength, bravery, wisdom, and (most importantly) love. P.S. Take the "nojunk." out of my address if responding via e-mail.
Response:
Sarah J Moran wrote: > Hi all –
er Newsgroups: alt.med.fibromyalgia Might want to check out the above newsgroup.
Response:
Sarah J Moran <sah…@ICI.NET> wrote: >Hi all – >I have a non-computer friend that has asked me to ‘punch Fibromyalgia’ into >the computer and get some print-outs… >Since the medical know-how of the group is great, I thought I’dd ask here >first >for a good URL or two… >My friend’s wiffe hasn’t been officially dx’ed yet, but gets relief from >preednisone…what is rx of choice? > best, sahree
I am very, very surprised that the doctor prescribed prednisone for Fibromyalgia. I’ve been diagnosed with Fibro for over two years and meet 3 times a week with a group of 11 people for aquatics therapy, and NONE of them has been prescribed prednisone. Steroids are never good for anyone on a continuous basis (cause liver damage and other problems). First, she needs to see a rheumatologist for a diagnosis. Often, doctors without true knowledge of fibromyalgia misdiagnose people with it when they can’t figure out what else is wrong. Seeing a rheumatologist familiar with the specific, fibromyalgia-exclusive symptoms is very important. Fibromyalgia often accompanies other diseases/syndromes. I have MS with it, but they diagnosed me with fibro first and ignored the MS symptoms. It was a visit to my rheumatologist that got me a referral to the neurologist and the diagnosis, because, once you get a fibro diagnosis, they tend to stop there and blame everything wrong with you on it. Again, that is proof that most doctors don’t understand fibromyalgia and that there are certain symptoms that are not consistent with fibro. In my aquatics group (it doubles as a fibro support group, btw), I don’t think there is one person who has fibro, exclusively. I used to be the only one, until they did my MRI. I’m not saying this to scare you or your friend’s wife, but these are some of the diseases/syndromes that fibro seems to couple with. In other words, these are other things wrong with various people in my group: scleraderma, ms, lupis, arthritis, migraines, wegner’s disease, hypothyroidism, etc. Scleraderma and lupis seem to be more common in our group than any other accompanying disorder. There has been no link between fibro and any causal agent. There is a lot of support that it is hereditary, but it is a newly realized condition that would not have been diagnosed when our parents or grandparents were our ages, even though it did exist. As for common medications… the usual course is prozac and elavil. Prozac for the mild depression that is a very common symptom. Elavil will help her get deep sleep. Fibromyalgia tends to impair sleep. The fibromyalgic brain has trouble slowing down; therefore, when they reach stage 3 sleep, it kicks back up to stage 1. That is why seratonin (which helps your body heal in deep sleep) is such a factor in helping people with fibro. Elavil or flexeril are often prescribed in low doses before bedtime, because they allow the brain to slow down and relax and accomplish deep, healing sleep. Getting that sleep is of primary concern, because insomnia is definitely a symptom and it leads to overall fatigue. Multivitamins are also indicated, and some doctors will supplement them with extra magnesium and calcium. There are some "fibro" diets floating on the web. Certain foods should be avoided, and other foods are recommended. The diets are very similar to the Swank MS diet, you will find. Some kind of pain medication is often prescribed (higher than average doese of ibuprofen, etc.) to relieve some of the inflammation and pain associated with fibromyalgia. My rheumatologist made a very good analogy that I feel is true. He said that, when a "normal" person sleeps, his/her brain slows to a 15-20% activity rate. However, when a person has fibro, his/her brain can only slow down to a 55-75% activity rate, and you just can’t get a good night’s sleep if your brain is working overtime. There is no cure or real treatment for fibro. The best "therapy" is fibroaquatics. The arthritis foundation in your area should be able to refer you to some place that has a regular fibroaquatics group. The hard part is getting motivated to get to the pool, but I have never been sorry when I have pushed myself to go. Not only that, but the biggest benefit of the therapy is that you are in a support group from day one, and everyone understands what you are going through. Like this MS newsgroup, information is shared. As for finding info about fibro….. I recommend the web search, too. When I was first diagnosed, I used the web resources extensively to get information. Never found a book at a bookstore or library that gave me as much information or kept me up to date on research like the web. Fibro, like MS, is one of those… "but you don’t look sick at all" kinds of diseases, so tell your friend to look for signs of fatigue and do his best to not let her get overly tired. Also, fibro is a temperature and barometric pressure affected disease. When the barometric pressure goes up around 30 or more, the fibro tends to be at its worse. Fibro gets better with warmth (summer weather, warm room temperatures, etc.), where MS is anti-warmth. That’s probably why I prefer spring and fall to the other two seasons. I can’t handle extremes with fibro AND ms. I hope this has helped some. I strongly recommend finding a good rheumatologist right away and getting a proper diagnosis. Fibro is not nearly as bad or hard to deal with as MS… but it’s not a pleasure cruise by any means. Kristi I asked God for strength, and he gave me Richard… the embodiment of strength, bravery, wisdom, and (most importantly) love. P.S. Take the "nojunk." out of my address if responding via e-mail.
Response:
Hi all – I have a non-computer friend that has asked me to ‘punch Fibromyalgia’ into the computer and get some print-outs… Since the medical know-how of the group is great, I thought I’dd ask here first for a good URL or two… My friend’s wiffe hasn’t been officially dx’ed yet, but gets relief from preednisone…what is rx of choice? best, sahree ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ "To laugh often and much; to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to leave the world a bit better whether by a healthy child, a garden patch or a redeemed social condition; to know even one life has breathed easier because you lived. This is to have succeeded." -Emerson ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
Response:
Sarah J Moran <sah…@ICI.NET, For the Fibromyalgia sites, I searched using the AltaVista search engine. There were nearly 2,400 hits found. Using a search engine will probably be your best way to find Fibromyalgia information for your friend. Just enter " Fibromyalgia" in the search engine and click on search or whatever title they use. I’m not sure, but think there is a Fibromyalgia newsgroup. You could check that out, too. Paul – Hide quoted text — Show quoted text ->From: Sarah J Moran <sah…@ICI.NET >Hi all – >I have a non-computer friend that has asked me to ‘punch Fibromyalgia’ into >the computer and get some print-outs… >Since the medical know-how of the group is great, I thought I’dd ask here >first >for a good URL or two… >My friend’s wiffe hasn’t been officially dx’ed yet, but gets relief from >preednisone…what is rx of choice? > best, sahree >^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ >"To laugh often and much; to win the respect of intelligent people and the >affection of children; to earn the appreciation of honest critics and endure >the betrayal of false friends; to appreciate beauty; to find the best in >others; to leave the world a bit better whether by a healthy child, a garden >patch or a redeemed social condition; to know even one life has breathed >easier because you lived. This is to have succeeded." -Emerson >^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
