Leg weakness and pain (New to forum

Discussion in 'Fibromyalgia Main Forum' started by icare, Aug 5, 2005.

  1. icare

    icare New Member

    HI I am 49 yr Male , I live in Canada and am new to this Board.
    I been reading post for awhile and decided to tell you my problems...sorry for the long post..
    Like most people i am still looking for answers.
    I was diagnosed having CFS/FM 9 years ago.I wanted to ask you if anyone here has leg weakness and pain related to CFS/FM.The Dr i seen told me leg weakness is not apart of this illness.I have been trying to figure out what is going on with my legs for 9 years and still no answers.
    I have had a million tests.( well maybe a 100 ) To list a few Nerve conduction ( 3 times) 3 MRI's lower back and Brain ( Checking for MS) Muscle Biopsy ( 1996) Many blood tests..CK level, Creatine,B-12 ect, all came back ok.
    Also blood flow to my legs is ok.No muscle wasting and no muscle deformation.My nerves are excellent and no numbness .
    I do have spinal stenosis but that having an effect on my legs has been ruled out becuase it is very mild.
    I guess i am afraid that the pain will get so bad i wont beable to walk at all.
    Its been a slow process, and after 9 yrs i can walk about 10 mins before i get the burning sensation in my both calfs and when i lay down the muscles ach and hurt.Recovery is getting alot longer these days.
    This week i was doing something and should have stop, but stupid me force myself and i ended up spending the rest of the week laying down..The recovery time scares me..I used to be better the next day, now i can go 5 days before my legs feel good enough to walk again.
    I find a hot bath helps the pain in my legs and also massaging the calf muscle's,feels good, but this relief only last while you are doing it.
    I have been doing some searching on how the muscles work and i kinda am starting to believe this is a biochemical matter.
    The one Dr explain it like this..If a runner keeps running its a matter of time before he will build up Lactic acid in the muscles and they will begin to cause muscle fatigue and soarness...With me its very pre-mature and happens very quickly.The only problem with that therory is my CK levels seem ok..Health is so confusing and frustrating.
    The only thing i can think of is too have my ATP tested.
    I take Oxycontin for the upper body pain i have,because my skin is Very sensitive to pressure.This pain reliever does nothing for the muscles in my legs.
    I think it will probably come down to pain control as i dont have alot of luck with my health..I have seen 31 Drs in 9 yrs.Its not like i didnt try.But i feel now its time to see a specialist and try and ask the right questions, and get some answers.
    Thanks for reading this.
  2. lovethesun

    lovethesun New Member

    is closly related to CFS.Leg weakness was one of my first sympotoms.Unfortunately it is diagnosed by a process of elimination.Nice to have you on the board.
  3. chazzsmom99

    chazzsmom99 New Member

    Hi!! I'm new too, but let me welcome you! I get to my computer maybe 4 times a week, because it hurts so bad to sit. I have leg pain too, and it's not in my head!! I find muscle relaxers work somewhat; also Theragesic.

    Hope this helps!

  4. jesfms

    jesfms New Member

    im sorry you are having the leg weakness...i have a very weak left side of body...it was so bad i was tripping over my foot...started some leg exercises with a rope to strenthen it and i am not falling now...i have had all the tests also...nothing...i believe it must be a part of fibro since i have heard others describe the same symptom...if you believe it is lactic acid could you dip yourself in very cold water and get relief...also does massage help since it releases lactic acid ...these do not help me..if you ever find the answer let us know...we share this same pain and weakness
  5. ceili

    ceili New Member

    I know exactly what you are experiencing........I was diagnosed with CFS 14 years ago and after a brief debilitating phase, felt I got better.

    Now, since January of this year, I can hardly walk.....steps are murder ......it's as if my muscles in my legs and arms are so weak they cannot carry me or allow me to reach without fatigue. :(

    And I also know about not being able to handle pressure of any kind on my body. My poor cat wants to sit on me while I watch tv, but it's agony for him to walk on my skin. :(

    Just wanted you to know you are not alone.........

  6. Shirl

    Shirl New Member

    Glad to have you join us, but sure am sorry you are having so much problems with your legs.

    I have FM, the pain when flaring, is worst in my upper back, shoulders, and chestwall. But on occasion I do get the leg pain too. FM is no respecter of body parts!

    What has helped me the most with the pain/spasms and the burning is ZMA (zinc, magnesium, and vitamin B-6). It was developed for Body Builders, but someone found out it helped with deep sleep and FM symptoms.

    If you will go to the 'Store' link at the top right of this page, just type in ZMA in the search feature there, and read about it.

    It changed my life!

    Ask your doctor about this supplement, I do not know if it would interfere with any of your meds.

    Again, welcome to the board, and hope you get some answers soon.

    Shalom, Shirl
  7. gmom605

    gmom605 New Member

    HI Rick, i also have real bad leg pain on both,i`ve seen 5 Dr.`s too for that in the past 3yrs.and they can`t find what`s causeing the problem ,when i walk within 10 min. i feel tingling and i have some numbness already on my rt.knee and if i sit for more than 20 min. my legs are going numb.so i have to get up from sitting. i`ve had 2 mri and they found a bulging dics,but the dr. said it was very mild.and i do have cfs/fm also,but i do have so much pain i can`t stand nomore ,oh and i also had another test done to see i had clogged veins but i didn`t ,thank g.so my dr. gave me meds.call gabapentin,and muscle relaxers but sometimes it helps but,yes like you said when a taking hot baths it seems to help for little awhile.... so keep me posted ,too ..{gmom }is interest, too your not alone..
  8. moxiepup

    moxiepup New Member

    Hi Rick: When I was first dx with FMS all my pain was in my legs big time, through trial and error I ended up on 1200mg of Neurontin at bed, it makes me too wiggy to take it during the day.

    Before that I was also on Zanaflex as needed for leg pain which worked really well. I'm currently on the Duragesic Patch 150mcg every 3 days and Oxycodone10/325 for breakthrough pain.

    My Dr said if my legs start bothering me all the time again I can up the Neurontin, I think that and warm water pool therapy helped me most with my leg pain.

    I now have been dx with CFS and CEBV so my legs are hurting more and my skin also feels hot all the time which is new for me. Well welcome to the board and keep reading that's what I do and it's amazing the stuff you will learn.

    take care,

  9. nje

    nje New Member

    i have about everything thats wrong with everybody on here,and when i see a post i know that i might can help,then thats what i`m going to do. my dr. said it could be coming with the fms and cfs but he wanted to do one more test ; he wanted to send me to a neurologist and so i did.he took a test of my legs called electrounalysis,(hope thats spelled right)they lay you on a table and shock all of both of your legs with some kind of gismo.all i know was it hurt like heck.i was squirming and biting my fingers to keep from screaming. but it came back that i had periprial neuropathy,
    which means;your nerves are damaged in your legs.well my legs really didn`t hurt that bad then,but the last time i went back for a follow-up shock treatment,he said they seemed better.well glory,my legs have really started hurting me now,nights mostly and they burn so bad,i jump in the shower also,but i also have percocet for pain.go pick yourself out a neuro.and make sure he has a good rep.i don`t have no idea where you live,i live in Spartanburg,S.C.and we have lots of good doctors,specialists,that are not afraid to give you something for pain or whatever. i believe if you take my advise you`ll find your answer,because the way you told it sounded just exactly like mine. good luck!!!!!!!!!!! NJE
    [This Message was Edited on 08/05/2005]
  10. JLH

    JLH New Member

    Welcome, icare/Rick, to our board/support group. Glad to have you!

    However, I hate to hear about all of the leg problems that you are having.

    I have fibro as well as many serious health problems. With the fibro, the weakness and fatigue are major issues for me.

    A little info about me: I am a 54 yr old female, retired after working for 30 years with a large corporation in the US, married for close to 35 years, and I have 3 adult children and 2 grandsons.

    My legs bother me a lot due to back problems and a current pinched nerve.

    I have found that a heating pad is my best friend and sitting on a bath stool under a really hot shower to "wake up" my muscles. I can't stand up long enough for a shower.

    Have you tried going to a chiropractor?

    I don't know anything to suggest to you, but I, too, found that by doing a lot of research on the internet gave me an insight to my other problems and needed info to discuss with the doctors.

    I take Cymbalta and Neurotin for nerve pain and it really helps the fibro pain, too. Have you tried either of these meds?

    When you get time, complete your bio (profile) so we know a little bit more about you!

    Also, another tidbit .... nobody minds reading long posts, but it does help everyone when you put frequent spaces inbetween sentences or paragraphs as to make it easier to read. (Like I have done with this reply.)

    Hope someone comes along and gives you a clue on what the source of your leg pain could be.

    Take care,
  11. twinkles49

    twinkles49 New Member

    I'm fairly new to posting on here also.

    But wanted to say welcome and that I also have the same type of leg pain & weakness you describe. I have fibro and numerous other things.

    When my rhemy doc put me on mirapex, I take it at night, it seemed to help with the leg and also hip pain I was having at night. It definately helps with the restless leg problem I have at night.

    But after a year of taking the mirapex it doesn't seem to help as much. So he is trying me on Reqip. I'm working up to the theraputic dose right now. Hope it does start to help again soon.

    I also take pain meds to but sometimes they don't work well for the leg pain and especially the weakness.

    Hope this little bit helps.

    Again welcome and take care, Twinkles :)
  12. Chelsi

    Chelsi New Member

    I have had symptoms for about 11 years. I have experienced (among other pains) bad leg pains during the night for the past five years and found the only thing that gives me relief is to get out of bed and stretch. I turn over continuously because of the pain under the pressure of lying on my leg. The left leg has also felt like it's shaking for a while now, almost like the feeling of sitting in a car with the engine running.

    I would suggest trying the stretching - making your legs as tense as possible for a few seconds, then releasing.

    I have also started going to Pilates and found this helped a lot. Gentle exercise is definitely the answer to staying on top of the pain.
  13. icare

    icare New Member

    Thanks for the Welcome.

    I have tryed many medications some that where mention like Gabapentin(neurontin)

    LIke i said before the hot baths and massages seems to help at the time, also cold would help, but it only seems to cancel out the uncomfortable sensations that i feel in my legs.
    The key for me is not too overdue it, and i can get along fairly well..If i walk and stand for too long the pain will last for days.

    I am taking Cal- mag again see if that helps, also a Multi-vitamine and B-12.

    I just hope and pray that it doesnt keep progressing to the point that only a few steps will indure pain for days/

    I will also look into more pain control.I am in Canada and some of the drugs mention , i am not sure is available.
    Diet is also important, i was just reading that if you eat alot of sugar, you can build up more Lactic acid in your body...so much for my sweet tooth.
  14. moxiepup

    moxiepup New Member

    Hello what a coincidence my BIL & SIL are up here MA for there annual 2 wk visit, she is a native of Cowpens,S>C> but they live in Spartanburg now.

    All five siblings and spouses went down Memorial Day weekend they have such a beautiful place right on a lake, it's like heaven. That part of the country is so pretty and the people are awesome so I will say Hey for ya.

    take care,

  15. gmom605

    gmom605 New Member

    hello Rick,from south texas,"gmom" my rhumy,is sending me to get physcial therapy to see if that will help with my leg pain,i can`t stand it no more they hurt to much,if not ,,, next step is pain mag. shots in spine,i don`t know about that ?,, let you know!! gmom,,,, as soon as i walk i feel that my legs weigh at least 50 pounds each and feel cold ,i just don`t know!!! thanks for your time,,,,
  16. achy

    achy New Member

    I could have written your post...know what your going thru, but I have no answers either.

    I was diag. w/ CF about 15 yrs ago....dig w/FM 5 yrs ago. And every doc has a different opinion as to what is causing it.

    I'm ot the point don't care about the why...just want relief. Dilaudid doesn't touch it, I understand completely!

    Hang in there
  17. LakeErie

    LakeErie New Member

    Hi and welcome. I also have bad leg pain and weekness mostly with my left leg. I finally broke down and now use a quad cane. It does keep me from falling most of the time. However I took a bad fall yesterday down a fleght of stairs. I'm all black and blue and have a sprained ankle.

    For over three years my left thigh has a numb patch from front to back with a burning ring around it. My emg has shown nerve damage in both arms and legs.

    I do take 1800 of Neurontin, but I am waiting desperately for Lytica to become available. I am also on a ton of other meds and suppliments. I do keep my doc informed of everything. I am afraid of narcotic drugs as a number of my family have had problems with addiction.

    My doc (family practice) is not as aware of a facets of Fibro, but is very willing to listen and learn. I believe that I an responsible for my wellbeing and take on the responsibility of searching for knowledge.

    Good luck
  18. darude

    darude New Member

    This is my major complaint. I have had Fms for two years but my leg pain and weakness started in Januray this year.I had two mris which showed pituitary tumour and lesions. Neuro says NOT MS and don't know if tumour is causing this.
  19. icare

    icare New Member

    This illness is so wide spread and i dont think there are two people with the exact same symptoms..

    MY first problem in 1996 was my legs..I was walking a good 6 hrs a day, up and down stairways, and it seems the illness attackes what you use most( just my thoughts).

    Then about 1 yr or so after stuggling with my legs and weakness, i notice the bed not feeling right..I would wake up at 3 am hurting...Stupid me thought there was something wrong with the mattress, but it was the nerves in my upper body becoming very sensitive to pressure.

    Then came the flue like feeling and was missing more and more work till finally i had to leave ( 2001) I left work the next day 911 happened.

    I spent the next 2 1/2 yrs pretty well in bed and then started slowing getting back some of my energy.

    Since last year i have been able to do things but i need to have rests, and that is my downfall..I have a hard time just leaving something i am working on.

    THis week i feel like i have had a set back..I was pushing myself, and standing and walking more than i should have , and even with today being day 6, my legs are still hurting but slowly get back to where i was before i started.

    Someone mentioned here about having cold legs...You need to have a test to see how your circulation is..I have had them all.Nerve conduction tests is where they stick the needles in the muscles and this will determine how strong the nerves are.

    This test didnt really bother me too much but i know some people didnt like having it done.
    I will continue on and hopfully get myself back to where i was a couple weeks ago.

    If there was anything i have learnt about illness, is you need to be Strong mentally.
    Being upset just causes more pain , it really does>>
    I have been able to change my thought process around..For years i felt so Bad, because i kept dwelling on the things i couldnt do anymore.

    Now i focus on what i " Can" do and it has made me feel better mentally.
    MY hobby is woodworking and i have been able to make a few things..Boy does that build you up and make you feel like your worth something.

    Thanks for listening
    [This Message was Edited on 08/07/2005]
  20. gmom605

    gmom605 New Member

    HI Rick,,,, i`ve had that test done for cirrculation and found nothing ,but why does my legs hurt? if i stand 20min my both legs and thighs go numb and feel so heavy,but dr.`s can`t find anything wrong.but i feel it ,,i know i`m not going crazy!,,,take care,gmom