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Need suggestions or opinions

tflaugherttflaugher Posts: 3
edited 06/11/2012 - 8:58 AM in Fibromyalgia
About a year after i had my youngest son i started having weakness in my legs when i would try to run playfully my legs would give out and i would collapse Sine then i have been to different doctors initially i was told that i had sensory neuropathy I tried neurotin at high doses and other similar to it with no help to my leg and lower back pain. The leg pain came first then the back pain came. I have had several test with different doctors and they changed my diagnosis in the last 5 or so years to fibromyalgia I have tried lyrica with no relief I have been checked and now am due to be chcked again for MS Doctor has told me i have signs of it but my MRI's and spinal fluid always come out good over the last several years accompanying this pain is severe tiredness and trouble staying asleep and or going to sleep with being awake for up to 2 or more hours trying to go to sleep i have low energy, depression i have had for many years with anxiety and panic attacks I feel like sometime is it in my head but my pain is so real I tell my doctors that it feels like i hurt clear to the bones My legs and lower back so much i cant sleep in the bed with my husband because it hurts so bad i move all night long and keeps him awake he says i jerk and flinch my legs all night long My sense of temperature is not good i have trouble telling if things are too hot or cold this happens frequently I have done physical therapy with no help make me hurt worse and they tell me that I have good strength with no ability for endurance my family says they understand but the dont at times i beg my husband to take my legs off because the pain is so bad when i told the doctor that he told me to go to hospital to get a shot for the pain I have over the last 6 months stop taking all meds except my heart pill of atenolol for mitrovalve prolapse which is taken 2 times per day at 50mg each time and as needed mainly once a day xanax Meds that i no longer take which i suppose to take are cymbalta 60mg a day xanax .5mg 4 times a day ambien 10mg at bedtime trazadone 150mg at bedtime percocet 325/5 or reverse that at bedtime nothing seems to help yes the bedtime sleeping meds help me sleep but i still have the pain which makes me irritable because im extremly tired ive had a sleep study done was told that i do not go into REM sleep when the weather is cool or cold I fel worse i constantly am cold It takes alot for me to even sweat and if i do it is a very small I was sent to Cleveland Clinic and was told that they didnt know what to do for me which made me feel like my situation will never get better also while there i was dianosed with COPD at the age of 37 lst summer when i do go to the hospital rarely for the pain in my legs the give me a shot of some kind of morphine or next to morphine forgt the name of it but it make me feel like vomiting and helps as long as i dont move Does anyone have any suggestion on what to do with my situation? Is this in my head, I'm was sent to a neuropsychiatrist who just does my meds because the doctor doesnt know what else to do not tht anything helps does anyone know of someone who can help?


  • SavageSavage United StatesPosts: 5,476
    ...I think I read you had sleep study, but I didn't notice if you take med for that.
    Not sleeping is crazy making and doesnt help anything. :)

    Re your legs weakness and give out...not sure how it all relates. It happens to me sometimes..and also if I'm carring something in my arms..my legs get weaker.

    The EMG my doc did was able to tell him more about the areas involved.

    I don't really have answers for you, but wanted to recognize your pain and situation and let you know you're not alone.

    Take care and keep us posted.
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • hi and welcome to the forum! we are here to offer you support and answer what questions we can. i don't have any answers for you either but did want to say hello!! please don't give up on finding a doctor to help you!! sometimes getting the diagnosis can be the longest road to travel..i do wish you were not in such pain and with no medication to help you, your life must be extremely difficult!! have you tried any nearby university hospitals? they have some of the newest tests and equipment of many hospitals.. good luck! stop by the forum anytime! Jenny :)
  • Big hugs to you hon...
    Im not sure but have any of your Drs explored the possibility of it being RSD...Reflex Sympathy Dystrophy? It used to be called CRPS (Complex Regional Pain Syndrome)...initially, I was diagnosed with this until my spinal blocks didnt work...also, I dont know how close you live to NIH, but it looks like they are doing a study right now on leg pain-I have never had any dealings with NIH, so I dont know how something like that works, but I thought Id put it out there for you!! Good luck and hugs!! Shell
  • I have never heard of that but I will check into those. What is NIH? Thanks for your input. I hope they found out what was wrong with you. I wish you well. Thanks again. Hugs!!!!
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