Fibromyalgia pain that wont let up---Help

Discussion in 'Fibromyalgia Main Forum' started by aliciamariah, Feb 2, 2009.

  1. aliciamariah

    aliciamariah New Member

    This past fall I was diagnosed with fibromyalgia and I am only 34 but feel 60!! I also have a sever case of RLS and I Take requip and klonopin at bedtime for it. I have been on these meds for 6yrs so they dont seem to be as effective. Over the past year I started having symptoms of just having pain every where and I was miserable. Finally I went to my doc and he gave me pain pills (which made a world of difference) and the referred me to a Rheumy. I went to that doc and I was treated like a number on a table. He reviewed my symptoms on paper and then said Yes you have fibromyalgia, then he handed me a pamplet and said see you in a few months. I asked him...what about the pain I am having and he said I dont treat it with pain meds so I said what am I suppose to to for relief. Again he reviewed my med list and said well the meds you are on should take care of it...again him not paying attention as to how long I have been taking them. I did start takin Lyrica but for me it wasnt effective. I will never go back to him but I do go to my reg doc this week to discuss things.
    Daily my legs hurt, my back hurts, my feet and hands. The muscles on my arms feel like they are being pulled away from the bone. My neck and shoulders are so tensce and stiff that I have to lay my head on a pillow. I also experience pelvic/hip pain and the menstrual cramps are horrifying. If i have 1 good day then I have 3 bad ones. Y do the docs think we do not need something for the pain??????
  2. Janalynn

    Janalynn New Member

    Hi there -
    I completely understand your pain - I know how horrible it is to live daily with it - how debilitating it can be.
    Will your regular doc help you with pain meds? It sounds like he helped you in the first place, maybe he will continue? Mine does. I even went to a pain clinic, which I did not care for, and my regular doctor agreed to continue treating my pain.
    If yours won't, don't give up - ask for another referral, either to a pain clinic or another rheumatologist - although, I've heard that many don't "do" pain meds.

    Don't give up - there is NO reason that you should suffer through life.
    Always tell how your pain is effecting your life, it seems to be more effective than how much you hurt.

    Good Luck - let us know how it goes with your reg. doctor.
  3. Gloria37074

    Gloria37074 New Member

    My"pain" started in January of 2008 and I have not worked since. I won't go thru how many doctors and how many tests I have been thru at a cost of God only knows how much. Thank God my husband has good insurance. My Pain Management Doctors finally settled on Fibromyalgia. I have spent many a day crying in bed wishing I were dead. I am sorry the Lyrica has not worked for you. They had to increase my Lyrica to 600 MG a day. I do take Cymbalta 60 Mg a day( it helps with pain and depression) and I also take Hydrocone when I start to hurt. I am better, however, I do have days. They do not have a cure for Fibromyalgia. I am told they(whomever they are)
    are working on it. Do you have a good PCP? If so go back to him/her and maybe he/she can help. They(I am beginnning to hate that word) can at least write pain meds to help you. By the way my niece also has Fibromyalgia, she was doing water aerobics which helped her. I have a hot tub so I sit in there about every day. Maybe sitting a tub of "hot" water would help you. Please keep in touch. I am new to this Board, I have never been on a Board before.:)
  4. tonakay

    tonakay New Member

    I sure feel your pain. You can bet your bottom dollar these doctors would change their tune very quickly if this happened to them. I hope your reg doc will help you this week with your pain. I had no luck with lyrica either, after four nights my hands and feet were swelled so in the trash can that sample bottle went!! Good luck.

  5. kaymac42

    kaymac42 New Member

    My Fm and pain seemed more manageble since beginning Lyrica Sept 07. But after a year, I began break thru pain. Stress escalated and so has the FM. I asked my rheumy for pain meds and learned she doesn't prescribe. She seemed perplexed that I would even ask after taking Lyrica and anti inflam meds! I'm wondering too if they could live one day in our pain without it.

    Makes me wonder what do they take when they have a headache?? A pain med?? Or tough it out??

    Pain just wears one down, causing further stress, and depression.

    At least my regular med doctor believes pain meds don't hurt when I don't abuse them. I take hydrocodone when I can't tolerate it anymore. Not very often. Hang in there, I know it's tough.
  6. lovethesun

    lovethesun New Member

    but they don't have the answers as they deal a lot with muscular problems,Fibro is a disease of the central nervous system;

    I would see a neurologist and then have them refer you to someone if they can't take you on all the time.
  7. JaneSmith

    JaneSmith New Member

    Hi Jaminhealth -

    You've posted many thoughts on GE. I started taking 50 mg. daily - about 2 months now. I can't say I feel better pain wise. Maybe I am not taking enough milligrams. Thoughts?


  8. cmt49829

    cmt49829 New Member

    to hear you ahve such unmanagable pain. I know how that is.
    sounds like we went to the same rheumy .... what a waste of time and $$$

    I cant take lyrica , cymbalta didnt do a thing for me either.

    I am on mobic and lortab, and still have breakthru pain alot.
  9. aliciamariah

    aliciamariah New Member

    Thank you all for your input and advice. It is always nice to see that we are not alone in these situations. Well....I went to my PCP a couple days ago and it was a good visit. I told him about the Rheumy doc and said that I did not care for him. He put me on Cymbalta 60mg daily and restarted the lyrica 200mg daily. I hope it kicks in together and helps but if not the lyrica does help my major RLS symptoms. He also gave me a sript for Lortabs and those really help with the pain issues. He is good about refills also. I actually felt good after leaving this appt. Lately my symptoms seem to have let up some but has settled in my neck and shoulders. Does anyone else experience the extreme pressure and tension in the shoulder/neck area. My head feels like a bowling ball. I start a new job in a few days and will be working 12hr days so hopefully the medications will help keep it manageable. Keep me posted on any info or issues that come up with the rest of you
  10. aliciamariah

    aliciamariah New Member

    talk with your doctor and see if your lyrica dosage can be increased to 100-200mg daily. Maybe that would make a difference for you. I have heard that it makes a lot of people very drowsy and they have to take it at bedtime but so far it has not affected me that way. I take 100mg in the AM and another dose in the PM. My doc started my on the Cymbalta for a combo treatment of the FM and Depression. Once the depression lets up them many of the pains also let up. Does the Mobic help you much. I tried that and it didnt work. Do you take anything else besides the mobic and lortab. It is amazing how the pain medication can take us from feeling so badly to feeling sooooo much better and functional. Rheumy docs treat arthritis and rheumatoid arthritis with pain meds and seem to have no issues with then why do they think FM patients are any different. Pain is Pain and should be treated accordingly.Let me know how you are doing
  11. cmt49829

    cmt49829 New Member

    the mobic seems to help overall . it seems I havent had as many awful days since Im taking it. I wouldnt say its a miracle fix or anything, but maybe a little bit of help.
  12. tonakay

    tonakay New Member

    I'm glad that doctor visit went well for you. Hope the increase in the lyrica and adding cymbalta helps. I took lortab for years then switched to norco to cut back on the tylenol. I'd say you had a good doctor visit. I have a lot of the neck/head issues myself, nothing seems to help much on it.
  13. kcfm

    kcfm New Member

    I am in my recliner after taking a vicodin and my biggest stress releiver is curled up in my lap,my cat! I take effexor, ultram and vicodin if all else fails. I had to get off Lyrica, too many side effects. I have seen some wicked doctors but I have a pretty good doc now. He is an internist. He is considering putting me on Ridlan for extreme fatique, anyone tried it?
  14. gentle-blonde

    gentle-blonde New Member

    Sorry to hear that you are having so much trouble with your doctors. But, they just don't seem to get it..since they don't got it... When ever I walked in; with a health problem, my doc would say could it be your Fibro... dah.. did I waste $45 for you to ask me if it was my Fibro.. Now they are finding that Diabetes goes with Fibro..and yes I now have both plus so much more... so now I get do you think.... But, to say what has helped me is getting your doctor to understand you are tired and need rest.. so give me something that will help me sleep. Give me something to calm my nerve endings.. I take Lyrica but in a very strong dose (1200mg daily).. the pain specialest just put me on Cyambalta 60mg daily to work with Lyrica for pain and depression. You may have to sit on top of your doctor to get him/her to understand this pain hurts you 1000 times a normal headache hurts someone. So your pain is so very real. You should look for a better Rheumy and maybe a Pain Specialest. Maybe a friend of yours has gone to a better one check it out. Also check out what doctors are online in your area. Check the yellow pages. I drove my husband nuts with trying to find what helps. And, yes he goes with me on doctor visits so he can tell the doctor what I am going through. Yes, I am in constant pain, but with even a little relief I feel there is hope. Research all you can online about your health problems, print it out, take it with you when you go see your doctor. This may help. Let them know you are no longer a push over about your pain and you want help NOW!!!!
    I wish you the best and will look for your update on the health board. We have a wonderful chat room and sometimes just talking to someone who is going through the same thing helps... BEST OF LUCK You will be in my Prayers...
    [This Message was Edited on 04/07/2009]
    [This Message was Edited on 04/07/2009]
  15. lynncats

    lynncats New Member

    well you go....your post was so awesome to me....tell it like it is!
  16. dwink

    dwink New Member

    I'm 58 years old and was diagnosed with FMS 21 years ago. It was much harder then to find a doctor who "believes" than it is now. I have been to a Rheumatologist more than once with it and they don't seem to want to do any more than rule out anything else, i.e. Lupus, MS, etc. and once they do that and conclude that we have FMS, they don't want to be bothered with us anymore. Yes, I tried Lyrica with no relief, and I agree, to many side effects, and I tried Cymbalta, it helped my depression for about 9 months then stopped, didn't like it's side effects and it did absolutely nothing for my fibromyalgia. My primary care doctor is a "believer". She is not one to give "narcotic pain medication", but , she has me on Xanax 2mg, which is a benzodiazapine, same as Klonopin, for sleep, and Darvocet N-100 limited to 1 at bedtime, Relefen and Robaxin for pain, and Effexor XR for depression. I manage. I also have moderately severe Osteoarthritis in my Cervical Spine between C4 and C7. I just had a Cervical Block for the severe pain I was having in my neck, shoulders, and down my right arm to my hand, right side of my neck worse than left. I've been going to PT for the severe tightness in my neck and shoulder muscles and this has helped the pain along with the block. I also get trigger or tender point injections when needed in my shoulders, my hips and low back. I believe "they" are getting somewhere with Research on FMS. It may not happen in my lifetime, but I believe they are on to something with the CNS theory, and the cause and possibly a cure will be found for this dreadful disease. God Bless...
  17. gb66

    gb66 Well-Known Member

    May I ask you a question? I read in your post that they are finding out that diabetes sometimes goes with fibromyalgia. I have had fibro for 30 years and on my last dr. visit my bloodwork showed 130 for blood sugar. They say I may have diabetes and need to be re-tested. I'm going in next week. Do you know where I can find information on diabetes being linked to fibro.? I'd like to read more about this. Thanks. GB66

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