Shirl, walking problems

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by toniad, Sep 9, 2002.

  1. toniad

    toniad New Member

    It's like my legs won't work right. Like there is a misfire in the transmission. They don't go like they do on a good day. It's like some others have described, I'm wobbly and the balance is lost. It's very difficult to move my legs. I have to use the walls or furniture to brace me. I can't walk far during these times, I feel I will fall. I haven't fallen yet though, Thank God.

    It's hard to explain Shirl! I don't know how to explain it. The pain is also much much worse during this time. Sometimes a really hot bath will ease the symptoms, but usually I have to ride it out when it happens.

    Well wishes!
    Tonia D.
  2. toniad

    toniad New Member

    It's like my legs won't work right. Like there is a misfire in the transmission. They don't go like they do on a good day. It's like some others have described, I'm wobbly and the balance is lost. It's very difficult to move my legs. I have to use the walls or furniture to brace me. I can't walk far during these times, I feel I will fall. I haven't fallen yet though, Thank God.

    It's hard to explain Shirl! I don't know how to explain it. The pain is also much much worse during this time. Sometimes a really hot bath will ease the symptoms, but usually I have to ride it out when it happens.

    Well wishes!
    Tonia D.
  3. caring

    caring New Member

    Well, I'm not Shirl and I know for a fact I don't know a quater of what she does but putting what I do know.

    Have you had this checked out by the doctor?

    If not I would highly reccomend that.

    I think you mentioned MS in another post and if you didn't then I'm bringing it up to you.

    As a rule from what I've read and living with an MS pt for many years now and talking to others there is no pain or very little with MS. In my husbands case no pain.

    Having said that there are people who have both MS and FMS so please don't rule anything out without checking it out first.

    Okey that's my little knowledge for what it's worth.

    May your day be better today than yesterday.

    pat
  4. Shirl

    Shirl New Member

    Pat, I will be totally honest with you, and that is what I know about these DD's you could put in a thimble, I have no medical background. The advice I give is usually what I do, or what I heard someone else here has said, or the archives, and the Library material etc, on this site!

    Now, you and quite a few others are well versed here, as you have been living with this as long or longer than I have. Plus I have Fibro, and Arthritis not all the others illness that are presented here. This board is for all of you to put your knowledge together, and that you do wonderfully. Keep up the good work.

    Now Toni, I would take this up with the doctor, as you have just been told.

    I get like this sometimes in the mornings when I wake up, and if I over do, walk too much or just plain exaust myself.

    But what you have explained here, is more than what I have. Make the doctor listen to you. It needs to be checked out.

    You take care, and let us know what they have to say. Many of us have described what you are saying, I hope they read your post and advise you.

    Shalom, Shirl
  5. toniad

    toniad New Member

    I have gone to the doctor, and been told over and over that I do not have a "disabling disease", to be happy it's ONLY FMS and nothing more servere. This doctor doesn't have it does she!

    I went to the psychiatrist to rule out more severe mental illness than depression, and he said what I have is a physical disease/disorder, it is not mental.

    I keep telling this doctor that I can NOT walk. My legs do not work. I look like I'm drunk or wobbly, like a toddler learning to walk when these flare-ups hit me. I have been checked for MS, and been told no, it's not that. It's JUST FMS. I have had EEGs and MRIs and they keep suggesting I need to get out of the depression and go for walks more often. I can't get the doctor to understand or hear that I have something wrong, and I need this to be diagnosed so I can have a better quality of life. I'm moving to another state next week, so hopefully I'll find a doctor there who will listen more and be more understanding about this bizaare disease.

    I don't know what to do other than deal with it and hope one day soon technology and medical science will catch up to meet me where I am.

    The problem with all this is two-fold: one, when I go out into the world everyday as a college student, people look at me as if I'm insane when one day I am walking pretty good and the next I am in a wheelchair. How do I explain my situation and quit worrying about other people's judgements?
    2nd problem: this is very disabling!!! and painful!!! the pain gets so bad during these times that I feel like I'm losing my mind. This is a rough way to live!

    This is not everyday, this is only sometimes.
    Any more suggestions or possible answers? I do so appreciate the feedback.

    Thanks,
    Tonia
  6. angelheart

    angelheart New Member

    Toni:

    My Mom walked like that and it ended up she was suffering from an underactive thyroid which was causing her many, many problems. The walking was one of them. Unfortunately, in my Mom's case she had suffered many years with problems before she finally went to a dr. -- to the point her organs were shutting down because of it. Anyway, her walking and other symptoms did improve after they put her on synthroid. I just remember her walking down the street very crookedly.... Have you had your thyroid checked? Just an idea....

    Angel Blessings~
  7. toniad

    toniad New Member

    Hi guys, It's been several months since my last post to you all, and I've gotten married and graduated from college since my last post! I want to reignite the discussion on walking problems, specifically, the type I have so I know a little more about what might be wrong with me. The doctors keep blaming the FMS or the depression, but I am not convinced that is the case. I'm wondering how many of you have the same type of walking problems I have, not the type where you get exhausted when you walk, but the type where it is almost impossible to walk because your legs misfire, (kind of looks like someone with MS when they are in relapse). I've been tested and prodded and patronized for 4 years now and I'm desperate to find an answer. I realize some of us here have been sick much much longer!
    Every day is such a chore when I'm so afraid to leave the house without either the wheelchair or the cane because I don't know if I can make it from the car to the building if my legs give out. I don't know what could cause this or how to explain it, other than being told "it is somatic", or, "it isn't anything disabling". How in the he(( could a doctor make that assessment when I get up to walk and fall on my face like a drunk lady???? That isn't disabling????

    I've been told by people who see me walk that I look like I have MS and to get tested for it. I ofcourse did get an MRI of the brain and most of my spine, and was told there is nothing wrong with me structurally. I am very frustrated at this point since I am constantly battling these "episodes" of severe burning pain and then the legs go. What am I supposed to do? I walk pretty good some days, then other days I get up and my legs buckle, and the pain starts. They last anywhere from a day to a few weeks or a month. These episodes come and go as they please, usually rest helps, but they stay as long as they want. I am weak and weary after an episode since I have to sit more and lay down more when I'm not walking so well. It takes me a while to come out of one of them.

    Anybody have any other suggestions outside of thyroid trouble? I've heard that thyroid problems can really mess up everything, and I'll ask my doctor about that next week. Is there any real rare or strange neurological disorder that this might be from? Or some kind of vertebral problem in my spine that might cause it? The one doctor told me that she doesn't think it is severe because it "comes and goes", it isn't like that all the time, so they think I'm nutty. GRRRRRRRRRRRR!!!!!

    I really appreciate you guys and all your input. I know you all understand at least to some degree how I am feeling and how frustrated I am with my body. I don't feel like I have to explain every little detail to you. That is a nice feeling for a change!!!

    Hope all are well today and have a good day.

    Hugs (soft easy ones :D)

    Tonia
  8. marcus1243

    marcus1243 New Member

    Hi, just to add that I have the same problem and the same concerns as you do. I have no answers, tho I do believe that thyroid dysfunction might have something to do with it. It's also worth mentioning that it's very unlikely to be MS if you find relief from a hot bath -- heat slows nerve transmission and your legs would be *much* weaker after a hot bath if you had MS. If not, it seems more likely that this is indeed a symptom of 'Fibromyalgia' (whatever that is!)
    Best wishes,
    Marcus
  9. lassiecass

    lassiecass New Member

    Hi Tonia,
    I wish I could say I have an answer for you, but all I can do is tell you what I have seen and felt myself. First, my sister-in-law has MS. It took the Drs. years to finally diagnose her problem. She actually had carpel tunnel surgery on the right hand and she now wonders if this was caused by the MS. The lesions did not show up for quite awhile on her MRIs. She had pain in her arms and numbness in her right arm and both legs. She used to say it was like her feet were asleep and it really bothered her. It started to creep up her leg and she developed restless leg syndrome. Meaning, she felt she had to move her legs, it is a weird sensation. It happens mostly when she is in bed and she has to get up and move. They finally diagnosed her around 5 years ago. Lesions showed up on her spinal MRI but she had MS symptoms for as least 12 years before that. She was so relieved to finally have a diagnosis. Of course, she is not happy to have MS but people finally were taking her seriously. She is starting to have more pain with her MS so yes, you can have pain with this disease. Keep at it Tonia, I hope you can find a Doc with some answers but do not doubt how you feel just keep being your own advocate and arm yourself with loads of knowledge. Sometimes you have to actually suggest to the Docs what tests might be helpful. Remember that medicine is a science and errors do happen.
    Hope the pain abates. Have a good day.
    Soft Hugs,
    Sandy (Cass)
  10. Jackie41

    Jackie41 New Member

    I know what you mean. My legs get very weak whenever I walk very far. I had a big workup at one of the "brand-name" medical centers and they could not find anything. They said it is a fairly common problem with fibro. I've noticed several people on this board with the same problem, so I don't think you necessarily have to worry that you have some progressive crippling disease that will only get worse. Get it checked out for sure, but don't worry yourself to death that they might have missed some rare and exotic disease. My leg weakness has been going on for a year and a half and doesn't seem to be progressive. I have good days when there isn't much weakness, and bad days when there's a lot, but most days are in between.
    I tried a cane and two canes but they don't give much support. For a while I did like so many and just didn't go anywhere, but I was only 28 at the time and used to be very active. I grlfriend of mine has MS and uses crutches part of the time. She showed me the proper way to use them without being hard on the arms and let me try them out. They worked beautifully and I bought a pair right away. I've been using them for almost a year and my mobility is so much greater than it used to be. I can go shopping, go to a mall, and even take longer walks for exercise. It hasn't been that hard of a psychological adjustment, probably because I don't have to use them all the time. Some days I don't need them at all. Other days,fortunately not that common, I can't walk without them. Most of the time though I just use them for long distances, Just to have the extra support and feeling of security. For instance, I usually use them to go to and from work, and to or from the office for lunch, but don't usually use them at work. Some might think that using crutches is too extreme a way to deal with this problem, but I think it's a lot less extreme than wheel chairs and motorized scooters. I lead a lot more normal life now than when I was sitting at home all the time afraid to go anywhere.
    There are two technical points that I've found to be important. You have to use the right king of crutches, not those awful underarm kind (my picture shows the kind I use) and you have to walk normally with them. You can't put all your weight on the arms and swing your legs through like you would with a broken leg. This is way too hard on the arms.
    Anyway, I sure can empathize with you and this is how I deal with it. If I can be of any help, just post a reply to this message.

    Hugs,

    Jackie
    [This Message was Edited on 10/23/2003]
  11. Shirl

    Shirl New Member

    Congrat's on the marriage and the graduation too, you are one brave young lady with a lot of determination!

    Honey, I can't help you, but I do have a suggestion, make a new post and address it to; 'Sujay', she is a doctor and is just wonderful with answering these questions, as she also has these illnesses.

    Hopefully she can send you in the right direction for help, or have some suggestions herself on what is causing your legs to do this.

    Let me know how all works out, and be sure to make that post to Sujay, and keep it bumped up if necessary! This board has been a mad-house with speed for the last couple of days. Its moving so fast that no one can keep up :)

    Shalom, Shirl
  12. sheried

    sheried New Member

  13. jhmitch

    jhmitch New Member


    Wish I could tell you what is causing this problem for you...unfortunately I have no idea.

    My using a cane always struck me as a bit like overcompensating until one of my legs gave out a couple of times in a store parking lot, now I won't go away from the house without it.

    Although I have arthritis and a few other medical problems which effect the legs, I do believe the episodes (with my knee giving out) were more related to FMS than anything else. Since then, I look for a shopping cart when inside stores, just for the stability they provide, and use the cane at other times. A cane or crutch is especially useful after driving or riding in a car when the stiffness and unpredictability an FMS sufferer's legs are often at their worst. Keeping a cane in your car or in the house might be what you need to provide stability when those wobbly days are upon you.

    Congratulations on your marriage, Toni!

    Best wishes,

    Janice M.
  14. browndd

    browndd New Member

    Toni, I can relate to the walking problems....10 years ago I was diagnoised with MS. I took meds and shots for years for a disease I never had...sucks huh! Turns out I have FM. The two overlap systoms quite a bit. I spend quite a bit of time in a wheelchair and even more time on a cane, I'm only 37 years old for petes sake! Please just be careful about any diagnosis ( as I'm sure you will). Remember there is usually no pain with MS and lots of pain with FM.Good Luck and Many Bleessings, Deb.D
  15. darude

    darude New Member

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    darude New Member