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Discussion in 'Fibromyalgia Main Forum' started by Elobet, Dec 7, 2002.

  1. Elobet

    Elobet New Member

    Hi everyone,

    Im a 27 year old wife and mother of a 2 year old boy and working full-time (somehow) and I was just diagnosed as having FM and have had non-stop pain for about 3 months. I have come across this board once before right after i was diagnosed but now ive decided to say hello :)

    I have heard that some days are worse than others and Fm sufferers have "flare ups" but I have had pain all over here and there for 3 months continually. The Rheumatologist has me on Prozac, skelaxin, naprosyn, and vicodin es. I have only really gotten relief from the vicodin and its the only thing that helps me get thru my day at work but I have been on it for 3 months and they want me to get off of it. I made the mistake of going to a Pain management dr and she did a little test that the neuroligist did (seeing if i have the same feeling on both sides of my body) and gave me a prescription for elavil, a 2ND anti-depressant, and had me go get a lyme disease test. I cried for like 3 hours because i refuse to go on ANOTHER antidepressant. Im not even depressed except for the emotions of having a million and one tests done and nothing has been found. Its crazy how these people think all you want is narcotics. I just want the pain to stop and I will do almost anything at this point.

    Does anyone have any suggestions for me that seems to help a little, like excercise or vitamins/ herbs? I went to the health food store yesterday and the guy told me to get magnesium maleate cuz that seems to help, so I did of course. Thanks for listening to me, cant wait to hear from you all! ~ Elobet
  2. Elobet

    Elobet New Member

    Hi everyone,

    Im a 27 year old wife and mother of a 2 year old boy and working full-time (somehow) and I was just diagnosed as having FM and have had non-stop pain for about 3 months. I have come across this board once before right after i was diagnosed but now ive decided to say hello :)

    I have heard that some days are worse than others and Fm sufferers have "flare ups" but I have had pain all over here and there for 3 months continually. The Rheumatologist has me on Prozac, skelaxin, naprosyn, and vicodin es. I have only really gotten relief from the vicodin and its the only thing that helps me get thru my day at work but I have been on it for 3 months and they want me to get off of it. I made the mistake of going to a Pain management dr and she did a little test that the neuroligist did (seeing if i have the same feeling on both sides of my body) and gave me a prescription for elavil, a 2ND anti-depressant, and had me go get a lyme disease test. I cried for like 3 hours because i refuse to go on ANOTHER antidepressant. Im not even depressed except for the emotions of having a million and one tests done and nothing has been found. Its crazy how these people think all you want is narcotics. I just want the pain to stop and I will do almost anything at this point.

    Does anyone have any suggestions for me that seems to help a little, like excercise or vitamins/ herbs? I went to the health food store yesterday and the guy told me to get magnesium maleate cuz that seems to help, so I did of course. Thanks for listening to me, cant wait to hear from you all! ~ Elobet
  3. pam_d

    pam_d New Member

    Welcome, I'm glad you found us! Keep reading here, you will find out about a lot of good stuff! I have started taking the magnesium, also, in the past couple of months. So far, I haven't found it to help pain significantly, but I'm only taking 400 mg (magnesium can cause diarrhea, so it's suggested that you build up slowly). I'm going to start 600mg this week, give it a few weeks, then go to 800mg. I have found that it does seem to reduce my tingling feet (which has been a big issue for me; common with FM) by at least 50%.

    Many here are on different combinations of meds, but many use only supplements, & many a combination. I'm hoping you hear from lots of people, because there are folks on this site that seem to have hit upon a strategy that does give them some relief. This is an illness that affects all of us differently, but we all do have a lot in common, too.

    I know that taking care of both a job & a small child is enough for a person who feels well most of the time, so I can imagine how tough this is for you! Please keep reading & posting here, though, many of us consider this site to be a lifesaver, and where we've found the most helpful advice & support.

    Take care, Elobet. Welcome, again, & hope you get some relief soon!

    Hugs,
    Pam
  4. catgal

    catgal New Member

    Hello~~I'm so glad you decided to join us. Sometimes it's a little slow around here on the weekends, but you can usually find someone one day or night. You can go up to the Search slot and type in a subject, and it will bring up all the posts that have been written on that subject. This Board is jam-packed with information. And feel free to ask any questions you want or to reply to anyone's post. There are no strangers here.

    I am AMAZED that you are able to work full time, take care of a 2 y/o child, manage a household, and do all that you do. I am 53 and have had FM/CFS for 35 years. I've had severe Asthma since I was born. As I got older I got osteo & rheumatoid arthritis, and last year was diagnosed with advanced degenerative disc disease.

    I was never able to get help with the FM/CFS. I know how frustrating it is to be in such pain and feel so bad every day, yet get no help from the medical community. I saw a rheumatologist for 3 years, he did absolutely nothing for me. Gave me a ton to various antidepressants and flexeril. Because of my asthma & allergies, I was allergic to the flexeril and most of the antidepressants. He never would give me a narcotic for the pain. I quit seeing him because he was of no help. I suffered for years needlessly and worked full time. Finally, in 1993 my pain & chronic fatigue got so bad that I had to quit my full time job and get a part-time job working 3 days a week, and I still work 3 days a week as I have to work because I am my sole financial support. I never could get a physician to help me with the FM/CFS, and was only made to feel "crazy", "lazy", or "foolish" by them. They could see I had bad arthritis on the x-rays, so they gave me anti-inflamatories which did not help.

    Between the FM/CFS and arthritis flares, I was in so much pain that it got to the point I couldn't function. I became so disabled and depressed, yet still had to drag myself to work. As often happens with FM, my memory went to hell; I couldn't remember how to spell words; went through bouts of bumping into everything and/or dropping everything, and the flares of fibro-fog clouded my mind so much I couldn't think properly. And my back would hurt so badly I lost my mobility.

    Finally, last year I was diagnosed with advanced degenerative disc disease and was referred to an orthopedist who did nothing for me. I stopped seeing him. Then, at last, I found a physician 34 miles from where I live who started me on narcotic pain management for my degenerative disc disease (ddd). It was only by being treated for the ddd with narcotic pain meds that I also got help for my FM pain as a by-product. The meds help with the ddd, the FM, and the osteo & rheumatoid arthritis. I take 10mgs of oxycontin 3x's a day, percocet for breakthrough pain, soma for a muscle relaxer, and klonopin at night for nervous leg syndrome & sleep. With the help of these meds, I continue to work although I still get some bad flares from time to time.

    You will find others on this Board that use various things for their aches & pains. What works for one may not work for another. It's alot of trial and error. You have to experiment and find what works for you.

    However, all of us have one thing in common that is a MUST, and that is adequate REST. I overdid it at work & home all last week and have been bedridden since Friday with all the things I needed to do over the weekend left undone.

    I welcome you to the Board. It is a tremendous support and a wealth of information. Don't let the medical community get you down. Stay in control of your health care. Search till you find a physician that is willing to help you. Best Wishes, Carol....



  5. theimpossibleflute

    theimpossibleflute New Member

    I also am new to the disease and have been looking for easy, rather inexpensive ways to treat myself. I am a sophomore in college, so funds are limited, of course!!! But I just visited a massage therapist the other day..did absolute miracles!!! She's using the St. John neuromuscular method...it takes time to really help in the long run, but even after just one visit, I felt "normal" (at least for a day!). My suggestion is to continue with the vitamins/herbs, but check out the website for the American Massage Therapy Assoc. They have listings for all states. Good luck!!!
    Abby
  6. karen2002

    karen2002 New Member

    I too, am recently diagnosed, but had been suffering unrelenting, severe pain for months. In my case, I am now having less, bad days, and a few better days. I think that this can be attributed to a lessoning of the acute symptoms, and/or finding a specialist in fm/cfs and the conventional meds and supplements I am taking.
    He has agreed, too, to let me continue taking the Vicodin, for those days during the week that the Ultram just does not cut the pain. You might ask your Doctor about such a pain management therapy.

    I went to many other specialists before seeking out this one, and thier conventional (uh-hum) wisdom is depressed, hand out the antidepressants. I was ill---and the depression, and anger was a result of not being treated, or finding and naming my illness, period.

    At any rate, I am progressing now, with my Fibro/CFS Doc, with adequate pain management, RX med and Magnesium, for the sleep issues. Plenty of Supplements---and wonderful care! Best wishes,
    Karen
  7. Shirl

    Shirl New Member

    Hi Elobet, sorry I must have missed your post all evening!

    That is very rough to have a job and a two year old with Fibro.

    You are going in the right direction with the Magnesium Malate. That is one thing we all seem to be lacking is magnesium. I have a list of what I take below, it is long, but this is what works for me. The only prescription drug that I take is Xanax, low dose at 6pm, as I have what is called; 'Racing brain syndrome', I lay down and the whole world will run through my mine! Xanax stops this for me, and I can relax and my supplements can be effective for helping me sleep.

    I hope you stay with us, like the others said, there is a wealth of information here on the board, as well as the research that is always updated on the 'Home' page. Lots of good advice there too.

    HOpe this helps, and if you have any questions, please feel free to ask them. We have some very knowledgeable people here who are very supportive for each other.

    Shalom, Shirl
    ============================================================
    ------------------------------------------------------------
    Product; Pro Energy: Malic Acid & Magnesium Glycinate
    (I take one before breakfast, and one before lunch)
    This is for energy and pain.

    Product; Ultra B-Complex (High Potency with Folic Acid)
    (1 capsule after or during lunch) This helps with brain fog, and energy too.

    Product; 800IU's of Natural Vitamin E
    (For numbness, heart, blood etc)

    Product; Ester C 500 milligrams
    (antioxidant, helps prevent colds, virus etc.)

    Product; ZMA (zinc, magnesium, Vitamin B-6)
    For sleep, deep sleep also helps with muscle pains.
    (2 capsules at 10pm )

    Product; Jarro-Dophilus (Probotics)
    3 a day for IBS, replaces good bacteria

    Product; Melatonin (5milligrams)
    To help fall asleep, take right before bedtime.

    All the above can be bought from Pro Health, be sure to ask for a free catalog/Newsletter too. If you want to call the number is; 1-800-366-6056 or you can order on-line. Just go to the 'Store' link on the top right of this page for additional information on supplements.
    ___________________________________________________________

    Product; Essiac Herbal Tea by Resperin Corp.
    This is a blood/liver cleanser. It is also known as a cancer cure/preventive.
    I take two ounces in the morning two ounces at night.
    Can be bought at most health food stores and Supplement catalogs.

    Product; Polynesian Pure Noni Juice
    (I take one teaspoon before breakfast, one before lunch for my IBS, it is a great product). I order it by the case!
    Can be bought in most health food stores, be sure you get the 'pure' juice or it won't work.

    Product; Natural Calm put out by 'Natural Vitality'
    This is a powdered Magnesium Citrate.
    (I take a teaspoon a day for pain also. But don't take too much it will give you diarrhea).

    This is about it for the time being, as for a multi vitamin, I have trouble digesting them, so I drink two cans of Ensure a day for the multi.
    ____________________________________________________________

    Here is some good advice; I strongly recommend you add ONE thing at a time for at least a week or two, this way if you have a problem with a product/supplement, you know what is causing it. If you try to take too much at once then if you have a problem, you would have to quit everything and start over again.
    I learned this the hard way, so though I would pass on this wise advice!

    It took me years to get the right things that I could take. Wasted a lot of money on eyerything from doctors, prescription meds, and vitamins and herbs too.

    Just remember, we are all different, so some of what I take might not be the right thing for you. It really is trial and error with these illnesses.

    Hope this helps, and if you have any questions, please feel free to ask. I am usually here everyday, but not at a special time.




    PS, always buy the best supplements you can afford, as you really get what you pay for with supplements. Pro Health has some of the best ones I have ever taken, and I am not just promoting them, its the truth. I have taken there products before I ever heard of this board.











  8. opala

    opala New Member

    Just thought I'd share my experiences with these drugs:

    Vicodin - I've been put on this recently to replace Lortabs. It makes me sick to my stomach, so I only take it if I ABSOLUTELY have to. Then it only works about 1 out of every 10 times. And only for a very short period. Please keep in mind that both Vicodin and Lortabs (both Hydrocordone/APAP) are NSAIDS. Taken over long periods of time, these drugs can cause gastro-intestinal problems, including intestinal bleeding. They can also cause liver and kidney problems. Be sure to discuss this with your doc.

    Elavil - completely useless. According to two of my docs, they don't even use this anymore, as it really had no effects. Try Zoloft or Remeron (or a combo of both, they are very complimentary if you take the zoloft in the morning and the Remeron in the evening)

    Skelaxin - also completely useless. According to a friend of mine (a nurse, also an FM patient) this drug does nothing. I was on it and I concur. Might as well have been on a placebo.

    Naprosen - also on this one, but it was for migraines. Didn't really work very well. I was also given this when I had endometriosis, and it didn't relieve that pain either. Ask your doc about cyclobenzaprine (Flexeril). Taken twice a day, muscle relaxer.

    Prozac - don't have first-hand experience with this one, but do know people who have been on it. There are some very serious long-term side effects to this drug, including extreme photo-sensitivity and long-term sexual side-effects. See my notes about Elavil.

    Other drugs to ask questions about before taking:

    1. Pamelor - an anti-depressant, which causes increased heart rate, facial ticks, nausea, diarrhea, IBS, and possible heart failure.

    2. Soma - an NSAID. In addition to the usual problems with NSAIDS, can seriously impair motor function (you get that woozy feeling) and is potentially habit-forming.

    3. Ultram - I've found it to be pretty much non-effective.

    4. Baclofen - Again, might as well be a placebo. Also triggered migraines for me, but I might have just had a sensitivity to it.

    Hope this has been helpful!!

    Michelle
  9. JP

    JP New Member

    Hello Elobet,

    Elavil is an antidepressant and is also used for nerve pain and insonomia. Your doc may be giving it to your for pain reduction..might be a good question anyway. In my case, 25 mgs of Elavil have decreased my morning numbness and pain. I can also sleep for 6 hours most nights. I have had great difficulty taking medications and I have surrendered to accepting the help for my chronic pain. I also use narcotics daily for pain management. I am on 5 meds right now. I used to be a veggie and an all natural kind of gal...big shift for me.

    Hope you get the help you need.

    Take care,
    Jan

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