Walking troube with Fibro

Discussion in 'Fibromyalgia Main Forum' started by toniad, Sep 8, 2002.

  1. toniad

    toniad New Member

    This is a very peculiar symptom, I think, since I haven't yet found anything written about this.

    When I get into a flare up, my legs don't work right. The pain is excruciating, and both legs feel as if they are on fire inside with a deep ache. I can't move them, I feel like I have little or no control over them. It's VERY frightening, and very ambarassing at the same time. I see no pattern really with this symptom. I feel very much like I could fall over, if I don't hold on to a wall or furniture or walker/cane. The pain during these episodes is enough to make me insane, I cry and rock and scream out at times. My legs are very weak, I need support to walk or an aide. I look almost like a baby learning to walk, the steps are very planned and exaggerated. It is most frustrating.

    It's hard to explain the emotional impact to someone who doesn't suffer with chronic pain. People tell me I can't give up, I have to keep going like nothing is wrong. You all know how frustrating and discouraging this disease is. Very few people in my life actually believe me or understand. That is almost as aggrivating as the symptoms, for me.

    I have had a few people tell me I walk (during the episodes) as if I have MS. I had one chiropractor tell me I should be tested for that.

    My question here of course, is how many of you, if any, have similar walking/gait disturbances with the diagnosis of fibro?

    Thanks for reading!
    Tonia
  2. toniad

    toniad New Member

    This is a very peculiar symptom, I think, since I haven't yet found anything written about this.

    When I get into a flare up, my legs don't work right. The pain is excruciating, and both legs feel as if they are on fire inside with a deep ache. I can't move them, I feel like I have little or no control over them. It's VERY frightening, and very ambarassing at the same time. I see no pattern really with this symptom. I feel very much like I could fall over, if I don't hold on to a wall or furniture or walker/cane. The pain during these episodes is enough to make me insane, I cry and rock and scream out at times. My legs are very weak, I need support to walk or an aide. I look almost like a baby learning to walk, the steps are very planned and exaggerated. It is most frustrating.

    It's hard to explain the emotional impact to someone who doesn't suffer with chronic pain. People tell me I can't give up, I have to keep going like nothing is wrong. You all know how frustrating and discouraging this disease is. Very few people in my life actually believe me or understand. That is almost as aggrivating as the symptoms, for me.

    I have had a few people tell me I walk (during the episodes) as if I have MS. I had one chiropractor tell me I should be tested for that.

    My question here of course, is how many of you, if any, have similar walking/gait disturbances with the diagnosis of fibro?

    Thanks for reading!
    Tonia
  3. Coping

    Coping New Member

    Hi Tonia,

    I know what you are talking about. I don't do it all the time. But sometimes I look like I had one too many cocktails when I haven't had any at all. My legs hurt like they did when I was a kid. My mom always called it "growing pains". I believe the doctors called it that too. It is excruciating. I have to wait until my husband gets home sometimes to shower, because I feel like I might fall. Legs are shakey and weak. I wasn't sure if it was my Fibro or if it was my Osteoarthritis.

    It is very frustrating in any case.

    Wishing you well,
    Tricia
  4. Kathryn

    Kathryn New Member

    Hi Tonia,
    I finally humbled myself to the extent of admitting I need help if I know I will be on my feet for any length of time. I am fortunate to have a LARGE German Shepherd who is extraordinarily intuitive. I took him with me on Friday when I went to leave 20 tons of paper at Social Security, and he saved me from a nasty fall twice by pressing up against me when I started to get shaky. His reward was a bright new harness. I now plan to take him everywhere I go, hair in the new car be damned! My only regret is the fact that he is already 10 years old, so I will too soon need to look for a suitable replacement.
    Kathryn
  5. toniad

    toniad New Member

    I'm very encouraged to hear I am not insane, that there are others with this walking problem. I'm very concerned about this particular symptom, because it affects my ability to leave the house! Or drive! Or care for my family/myself. So, thank you for replying. I appreciate it!

    Tonia D.
  6. Dawnt

    Dawnt Member

    On good days, I just have that horrendous pain in my legs. On bad days, I don't walk. In between, I stumble alot. I know your pain. The walking, standing, and the cold seem to make it worse. I take Skelaxin, Fentynal patches, and Darvocet for the pain. Even all that doesn't take it away. Havn't found anything thing that keeps it away, still working on it.

    Good luck to you
    Dawn
  7. Shirl

    Shirl New Member

    This happens to me sometimes too. Like Kathryn said, I have a boxer that helps me get down my stairs, and will help me to the bathroom too. She is just a living doll to me! But she is also getting older, she is 9 years old, and I doubt seriously if she is replaceable! Boxer's have a natural instint to know when their owner needs them.

    I usually get this way in the morning when I wake up, but not too much lately.

    What are you taking? I found that after I started takine 'Pro Energy'(malic acid and Magnesium), and ZMA (zinc, magnesium and B-6) at night, that my balance has improved tremendously. ( I get both these supplements from Pro Health, you can go to the 'Store' link at the top of this page and read about them. They strengthen the muscles in our bodies.


    Most FM/CFS people are deficient in this mineral. It could be one of the reasons we have this problem.

    I hope you find out what is causing this, and have some help correcting it.

    As for people understanding this illness, you have to educate them, thats what I did with my husband and children. As for friends, those who didn't believe me, I eliminated them out of my life, I don't need the added stress.

    Take care........

    Shalom, Shirl
  8. toniad

    toniad New Member

    Hi Dawn

    I must say, more of you have the same symptoms that I have and that is encouraging, just because I am no longer totally alone in this.

    The few things I have found that take away the pain aren't ethical or moral really - not for me anyhow - (marijuana and alcohol), so I take what the doctor gives me. I have been on: Fentanyl, Oxycontin, Methadose, Vicodin, Percocet, Tylenol3, Flexeril, SKelaxin, Zanaflex and now I take, Neurontin, Darvocet and Elavil. Most of the meds made me extremely sick & nauseous, and I would vomit a lot from them, and developed stomach problems.

    I also haven't found any meds that completely take the pain away. I just take a hot bath and put a heating pad on the places that really hurt during flare-ups. I haven't found much else to help so far either.

    Thanks for the reply!
    Tonia D.
  9. nje

    nje New Member

    i stumble around like a drunk woman,its embarrassing and my legs ache something terrible,and i haven`t found 1 good pain killer that takes all the pain away. i was on wygesic,it wasn`t doing nothing,so he put me on ultram50mg,by itself sometimes it gives some relief but i have found out by a little experimenting on my own,that if i take 1 ultram and 1 of that wygesic that it pretty much gives you relief, i don`t do that often only when they hurt really bad. sometimes you just have to help yourself and experiment, i read a post the other day on here where a woman did that, so thats what gave me the idea, also i`m fortunate enough that pain pills don`t make me sick and i can tolerate high dosages,while like you, some people get sick when they take them,but if you will eat a little something with it, that would really help,me i can take them on an empty stomach,thats good for me since i don`t eat regular. well hope you can find something to control your pain.
  10. nje

    nje New Member

    i stumble around like a drunk woman,its embarrassing and my legs ache something terrible,and i haven`t found 1 good pain killer that takes all the pain away. i was on wygesic,it wasn`t doing nothing,so he put me on ultram50mg,by itself sometimes it gives some relief but i have found out by a little experimenting on my own,that if i take 1 ultram and 1 of that wygesic that it pretty much gives you relief, i don`t do that often only when they hurt really bad. sometimes you just have to help yourself and experiment, i read a post the other day on here where a woman did that, so thats what gave me the idea, also i`m fortunate enough that pain pills don`t make me sick and i can tolerate high dosages,while like you, some people get sick when they take them,but if you will eat a little something with it, that would really help,me i can take them on an empty stomach,thats good for me since i don`t eat regular. well hope you can find something to control your pain.
  11. lilrascal

    lilrascal New Member

    You're definately not alone here. In the mornings I walk like a little ole lady in a retirement home who's been dipping into the Jack Daniels. I keep a cane handy for the bad days, and always head straight for the scooters when I go into a store. Now if I could just afford to buy one!

    Heat and Ultram give me the best relief. I normally take 1 tablet (50mg), but on flare days take 2 or 3 at a time.
    BTW, Ultram now has a generic, which is good news for anyone paying out of pocket. It's called Tramadol.

  12. Lynda B.

    Lynda B. New Member

    That is one of the hardest symptoms to exlain to people. Others sure don't understand how FMS could cause problems with walking. Sort of like it CAN'T be that serious.

    For years off and on my legs have ached. Cold weather always brings on the challenge of pain in my legs. I finally learned to slowly get up in the night because my legs would buckle under me. Usually when might hurt it is a flare up that lasts a few days to several weeks. I hurt in the joint at the top of the leg socket, my knees, my ankles, feet and various places in between. The muscles in my behind also hurt very much. That is when I can barely stand to be touch on my hind side. Stairs are very scary and I can hardly stand to by on my feet for very long at all.

    Wish someone would explain more about that one too!

    Lynda B.
  13. caring

    caring New Member

    Walking is my exercise so when I have the pain (like today) that you describe I just want to scream, sometimes that does help.

    What have I done today, I prayed my rosary, took a shower, washed my hair and came here. So far my treatment for this today is very few words as I feel no one understands anyway and the windows are open so screaming is out, the neighbors might think I'm in trouble!!

    I'm sorry you have this problem but so glad you posted as now I know once again I'm not alone.

    I do take what Shirl says too from the store here but sometimes like 4 a.m. this morning not even that helps.

    I might go find a field and just scream!!!!!!!!!!!!!!!!!!!!!

    Blessings to you
    pat
  14. contessa

    contessa New Member

    Until I got this condition strangers would occassionally stop me to comment on my wonderful walk. I kinda floated along when I walked. I saw my video from my wedding - a backshot of two piggies trying to rumba under a lace drape! Now I take three little steps for each big one I used to do. I also walk side to side - I look like an old seaman walking the deck in hurricane waters. I really suspect my neighbors would think I'm home all the time now because I've developed a drinking problem.

    I did find a lot of help a few years ago when my husband was able to work with me on his martial arts stretching exercises. Tai-Chi also helped. But he's working two jobs now and hasn't the time. I can't do them alone because my balance is impaired. I have noticed that when my legs start to go my feet turn inward (pigeon-toed). When I'm healthy they are straight ahead.
  15. TeresaBnGA

    TeresaBnGA New Member

    I have alot of trouble walking too. They seem to have a mind of their own. I lose my balance alot. Stairs are a BIG problem, goin up or down. I use the shopping cart in the store, when I get to go. I also have a cane but even with that I find myself having to hold onto things.
    I have trouble with the coordination of my hands too! I use to pride myself on the fact that I could type 100wpm and now it is down maybe on good days 15-20wpm.
    Hope this helps!

    Soft hugs!
    Teresa :)
  16. little

    little Member

    My walking over the last few years has been very difficult and painful. I got a cane last year, that helps with balance. The pain is something else. If I over do it a little I have to go to bed for awhile.My time for being up and about is down to a few hours. It is so fustrating that I can't do what I used to do. Some days I get real frighten because I can't use my legs and I have actually crawled to the bathroom. Some days my legs feel like they are on fire and yet I have the chills. You never know from one minitue to the next what to expect from this DD.HANG IN THERE,GAIL
  17. granmama

    granmama New Member

    My dog Damian is a cross Rottweiller/Black Lab. He is 7 years old, and is in tune with my needs.

    One morning, I got into a very painful position in bed, my hips and legs were killing me!

    I have a bedside bell and ring it to get my husband's attention as he gets up far earlier in the morning than myself. He had already put Damian outside(he sleeps on the floor next to me).
    My husband (who was in the far end of the house) did not hear me ringing the bell nor did he hear me shouting. In my desperate try to get help, I began crying, stuck in this position with so much pain.
    While all this was going on, my husband heard a loud noise, it was Damian at the back door trying to get in to help me.
    As soon as my husband let him back inside, he ran to my room and jumped on the door. My husband was totally baffled at this dog's behavior, until finally heard me crying for help.
    So, now Damian has been trained to the word "HELP".
    When I am having difficuly getting out of bed, I tell him I need help and he sits up and stiffens his body so I can pull up on him.

    I am glad to know there are others who have pets that are there for them and are sensitive to their needs.

    granmama
  18. clueless

    clueless New Member

    My legs and feet are my most painful part of my body. The hot, intense burning pain is so terrible. This became so much worse after I had my tail bone removed.I also start in one direction and weave over into another.I am on oxycontin.neurontin and klonopin and I am still in pain all day. When I wake up in the morning it is the worst. After I move around a while it is some better.Without the pain meds. it would be not bearable. My love to you I know how you feel. My prayers and soft hugs to you!! Clueless
  19. ephemera

    ephemera New Member

    Hello. Over the past 1 year 10 months knees have buckled forward & hyperextended backward between 2 & 15 times daily (keep count in my health diary). It usually feels like someone's shoved a knife into my knee or that the top & bottom of the knee shifts one on top of the other or one off-track & over to the side. This happens when I'm sitting down, standing up or walking. Sometimes the pain is so fast & furious I cry out automatically.

    I've been doing water therapy for a year. I seem to have slowly strenghtened my muscles & ligaments in that the episodes are less freguent. Up until 3 months ago I walked backwards downstairs because I felt so unsure of myself.

    Bummer...

    Best thoughts.