Author:
Alison aka applecreek or applepansy
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Date Posted: Wednesday, February 18, 06:42:32pm
In reply to:
mel1979
's message, "fibromyalgia" on Sunday, February 15, 03:46:58pm
Hi mel,
I'm sorry it took so long to reply. I saw your message on Sunday but I've not felt good enough to do much of anything. My daughter swam in a State Swim Meet here in Utah, USA and I spent two days in a noisy, hot, uncomfortable environment sitting on hard bleachers being a supportive mom. Then I paid for it.
What to do about treating FMS? That's a hard one because everyone is different and what works for one doesn't work for another. We're all different, what triggered our FMS is different and our bodies metabolize meds differently. So . . . . .
First, Find a supportive doctor. One who believes that FMS pain is real. Also a doctor who is willing to learn and isn't intimidated when patients bring in information found in books or on the web.
Second, Read!!! READ!!! Everything you can get your hands on. One book that is a bible for FMS patients is "Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual" by Dr. Devin Starlanyl and Mary Ellen Copeland. Dr. Starlanyl has a helpful website also. There used to be a great website by a lady in Australia but I forget the url and I've had three computers since I first found her website. Remember to read about other things like mycoplasma infections and thyroid issues and other things like that.
Other websites are: this one! (Tess has done a great job.), Fibrohugs.com, WebMD, Prohealth Network, and many others. Just do a search. Prohealth has a very active chat room community of FMS patients.
Third, Do not under any circumstances stop moving. This is the one thing I wish I had known 15 years ago. When you don't move FMS muscles weaken fast and then it hurts worse to move. You're going to hurt whether you exercise or not. You can have strong muscles and hurt or weak muscles and hurt worse. If you haven't been exercising, start SLOW. . . like maybe only 2 minutes of walking a day. But try to do it every day and eventually increase. A stationary bike or treadmill is great because you get consistent resistance without the uneven ground, traffic, or weather conditions.
Fourth, You've already started to do this one. Find a support group, either online or in your area.
Fifth, Read about the Guaifenesin protocol. Dr. Paul St. Amand discovered that guaifenesin can be very helpful for FMS patients if they follow the protocol precisely. Dr. Deven Starlanyl takes guai and talks about it in her books. Dr. St. Amand has a book too. You can find all the info you need at www.guaidoc.com. When this protocol is followed exactly, almost religiously, and consistently it can really make a big impact in quality of life. However, like everything else it doesn't always work for everyone for various reasons.
Also, B12 injections have helped some FMS patients tremendously. But most doctors won't prescribe adequate dosages. My current doctor is starting me on 5000mg/cc several times a month. The standard dose is 1000mg/cc once a month. FMS patients need more.
Sixth, Pain meds! If you don't have a history of drug abuse and you have a doctor who truly understand pain management you should be able to get adequate pain relief without a fight. Pain meds for chronic pain should be taken on a regular dosing schedule, not as needed. When done this way low doses are used and the benefits can be great. I've been taking continuous release morphine since Nov. 1999 and have not had to increase the dosage. I also have Tylenol with codeine and Ultram (tramadol) for breakthrough pain. Ultram can interfere with sleep so don't take it in the late afternoon or evenings.
Seventh, Do whatever you have to do to get Stage 4 sleep. Without adequate Stage 4 or REM sleep our bodies don't make hormones that repair damage. This is one of the reasons doctors prescribe psychotropic meds, but there are sleeping pills that can be just as or sometimes more helpful without the side effects.
Last, Read everything you can about other meds your doctor may want to try. Many FMS patients are sensitive to chemicals and so the antidepressants and other psychotropic meds most doctors swear work wonders for FMS patients have just the opposite effect. You can look up meds and side effects at www.rxlist.com. It won't hurt to try these meds just don't put up with side effects you can't live with. A doctor who is willing to work with you will know that psychotropic meds don't work for all FMS patients.
I'm sorry that you're having to deal with chronic pain. It can make your life difficult but if you take good care of yourself, improve your nutrition, moderate exercise, etc. you can still have a life. Chronic pain has made me more compassionate towards others. Because you can't see pain many people believe we're not really all that sick. There are other illnesses that do this and as a rule most humans try to hide how they feel so as not to effect their loved ones and those around them. We also don't like to sound like chronic complainers. Just be honest with yourself and your loved ones about how you feel. The rest of the world can take a hike. There is a wonderful Letter to Normals here and at Fibrohugs that you might find helpful.
This is long. . . sorry. I hope some of this rambling is helpful.
If you have any questions or want to talk don't hesitate to email me Alison_applecreek@msn.com
Take care and hang in there!
Alison
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