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difficulty walking
20 Replies
littleloey - March 9

I have FM and and am having problems walking. My legs are so weak and shaky. My rheumatologist says it's not a part of fibro and my othopedic dr. says there is nothing bad enough in my back to cause it. I had the same proplem last summer and was off work for 3 months, until the pain specialist gave me an epideral in my lower back. I've had a second one and now they don't want to give another to me. I'm seeing the ortho again and the neurologist a week and a half later. Seems as if no one has an answer for me. Has anyone else had poblems with their legs and walking coming from the fibro? I'm getting desperate for answers. It is so discouraging.


OnaJourney - March 9

Yes, I have weak and shaky legs. They are improving very slowly, but some days are better than others. If I do too little they are very weak, if I do too much they are weak from overdoing. I just saw a Fibro specialist who acknowledged weak muscles as one of my main symptoms. She encouraged me to use my legs as best as I can. So I persevere. I experience a lot of weaknes climbing stairs, and sometimes even one step, say a curb from the street. You can start with chair exercises, lifting one leg up at a time, using your hand for support if necessary. Good luck. One step at a time!


January - March 10

Maybe you need another opinion? Assuming you're getting enough exercise to be able to walk comfortably...I believe certain spinal problems can cause weakness in the legs. Have you had an MRI to check for things like spinal stenosis? Another thing to consider - if you have general weakness - one thing among many LOL! - is that you might have an electrolyte imbalance. For example, low potassium can make you feel very weak.

If you are getting cortisone shots into your back, you might want to check some of the latest research that states these shots offer only short term relief - but within a year the pain will come back worse. It's possible the shots damage the tendons. That may be why they don't want to give you any more.

I've had problems with my legs - and it took a LONG time for anyone to come up with the right diagnosis. I have back problems - and even though I exercised, there were just certain muscles that were terribly weak and cramped up easily. The correct diagnosis only showed up when I got a sitting MRI (i.e., NOT lying down).

Wishing you luck, and hope you feel better soon.


littleloey - March 10

I do walk as much as possible. I have been working and was doing pretty good walking until mid afternoon, then it gets steadily worse until I go to bed. At work I have to go up and down stairs probably at least 10 times a day. Recently I have been starting out pretty good at the first of the week provided I pretty much rest all weekend. As the week wears on it comes earlier and is more severe.
Today however , it was bad as soon as I get out of bed, I have pain in my lower back and hips but orto says it's my back problem is not severe enough to cause walking problems.


January - March 10


Here's what I copied from a site called The Spinal Column:

Signs of Spinal Stenosis
Leg pain from walking is one of the more common symptoms of spinal stenosis, but may also indicate an arterial circulatory insufficiency. Rest will help to ease leg pain from either condition but a tell-tale sign of spinal stenosis is that the patient will usually have to sit down for a few minutes to feel relief from the pain. In patients affected by vascular claudication, the act of simply stopping walking will provide relief from the pain.

Generally speaking, symptoms of spinal stenosis develop over the course of several years, occasionally becoming acute. In most people suffering from spinal stenosis, THEIR LEG PAIN WILL WORSEN THE LONGER THEY STAND OR WALK. The most common way to relieve leg pain and other spinal stenosis symptoms is flexing forward or sitting. Pain from spinal stenosis will often recur when you resume an upright posture. NUMBNESS AND TINGLING sensations often accompany spinal stenosis pain and may be accompanied by MUSCULAR WEAKNESS in some cases. If you have seen someone leaning over the handle of their shopping cart while making short stumbling steps, it is a sign that that person most likely suffers from spinal stenosis.

I first noticed weakness in my hamstrings before I was 40 - and I was fit! My MDs ran CAT scans - but they turned up nothing. I went around to different doctors, and they all tried to push cortisone shots, but nobody had a firm diagnosis for me.

It was MY idea to get a sitting MRI a few years ago; it shows what your back looks like when you are upright. It CLEARLY showed multiple back problems, including stenosis. And yes, this can make it hard to keep walking! Stenosis can get worse over time - and you have to keep your weight down. Stenosis is a separate problem from fibro, but the general pain and fatigue of fibro just makes this harder to endure.

I don't know what's up with you, but you might want to push for some more definitive testing, just to make sure your back is OK. When you said your hips and lower back hurt - I could so relate! I'd push for a sitting MRI (accept no substitutes!) to make sure you can rule out back problems. If you have stenosis, they may offer you surgery - then you have to make a decision about the risks on that front. Hope you get some kind of relief soon.

And PS - think it over before you let them inject you with anything for the MRI! A simple MRI should show your problems. Gadolinium, a contrast dye they inject you with, has caused serious kidney problems in some people.


mdak - March 12

Just dont let yourself get down for too long. I found that out. The muscles just waste away. I have had problems with my back. I am now disabled due to many medical poblems. I hope you find out what is causing this.


littleloey - March 13

Thanks to all who have responded. I saw the orthopaedic surgeon yesterday & had new x-rays. He says he just does not see anything that explains my symptoms. I have had multiple cat scans and MRI's since last May. I was told that I had some stenosis in my neck. I had almost forgotten about that. No one seemed to think much about it. Now I wonder if I might have it in the lumbar also. The ortho said that if my appointment with the neurologist doesn't give me any answers, he suggests I go to the Mayo Clinic and see if they can figure it out. Having FM compicates it because it gets worse with stress. And right now I am definately stressed worrying about my inability to walk normally and what that means for my future. I'll update when find out anything.


kvc33 - March 13

Both my bf and I have the weak, shaky legs. The more we do the worse it gets. Some days are better than others. Do you notice that it is worse on your low energy days? For us, it's really about exhaustion. The muscles get tight, painful and refuse to work after a while.


littleloey - March 13

Yes, it definately is harder to walk the more tired I get. Or it was. A month ago I was ok in the AM but then would get progressivly worse as the day went on. At this point I am feeling totally exhausted and could sleep many hours a day. Walking from my livingroom to my bedroom which is about 70 ft, leaves me totally worn out and breathing hard. Fighting to keep my balance, the shaking and my feet not wanting to go where they are supposed to, is very tiring. I'm still trying to go to work but everyone there looks scared when I'm like this. I know they are afraid I'm going to fall. I'm afraid I'm going to have to go out on disability again very soon and worry about the security of my job with it being the 2nd time in less than a year. Sorry to run on so long, but it is so good to to have this site and be able to vent here instead of worrying my husband anymore than he is now.


kvc33 - March 13

When my bf first came down with CFS it attacked his legs very badly and he had to use a walker to get around. He took early retirement with disability benefits and about a year later he switched to a cane which he only uses occasionally now. I think your working days are over and you need to apply for permanent disability.


mdak - March 14

littleloy- I was reading your posting. I had some trouble like you and I am so glad that my job had both short and long term disability. You had to pay for long term disability each paycheck. I knew my body wasn't the best of health and afraid not to have this. Sure enough,I became very sick. I used all my short time up and luckly I had long term from this company. I was able to get social security and get my long term that I took out at work also. My long term saved me because I had to wait about 9 months without pay. It kicked in and I could pay my bills. I am not sure if you know about the family leave act. if not check in with that. I hate to hear that others go through this like me. Still to this day, I have so many problems.


littleloey - March 15

mdak, Thanks for sharing your experience. Yes, I do know about FMLA. The thing is that I used up almost a full 12 weeks of it last summer when I first got bad. Fortunately I do have short term and long term disability insurance that carried me through last time. I think I'll probably have to go back on it again. I don't know about FMLA since it only covers for 12 weeks in a 1 year period and it's not been a full year yet. However I have been with my employer for 25 years and don't think they would terminate me for a awhile. But you never know these days, It probably isn't going to matter anyway because I don't think I will have any choice much longer. I'm just taking it day by day right now. If only the Drs. could tell me what it is, then I might have a better idea which direction to go.


littleloey - March 26

Hi friends! Had my appointment with the neurologist very unsatisfactory. He said that since neuroloigically there is nothing wrong, that it is coming from my mind so I need to see a mental health professional. This after spending 10 minutes at the most examing me. My husband and I both sat there stunned, He did not seem to be much of a beleiver in FM either. Long story short, I retuned to my family dr. and he has done more tests. It seems about 99% sure that I have Paget"s disease of the bone. I have a bone scan and an MRI scheduled for next week to confirm, but there is not much doubt it, just need to find out how many bones are affected.
Do any of you have Paget's or know anyone who has it? Do you think there is any connection to my FM?I can't seem to fing any kind of forum for Paget's. I have read everything I can find on it but it sure would be nice to know of others experience with the disease.


Neenez - December 1

Hi everyone, I've read that walking supposed to help with the fibro pain so I started doing this almost 2 months ago. The first time practically knocked me off my feet. Also, as another poster stated, the pain gets worse later after you've done it. The main reason I try to walk is because I feel I'm too young to be able not to move 10 yrs. from now. I really want to be as flexible with the fibro as much as possible. Yes it hurts. What makes it worse is that if I push myself too much, my lower back starts to hurt. I have 3 herniated discs which causes me to kind of hold my back until I get home. The hernia is from a car accident, not from fibro. I just hope this pain is worth it as I age.


littleloey - December 1

Hi, Glad to see that people are posting again. My condition has not changed except that I am having more back pain than ever. I think it comes from the scoliosis and the bulging disc.
The fatigue is still overwhelming. My Dr changed my meds to Effexor but I see no improvement in my symptoms. No worse, but no better.
I have been unable to work since last May and am still on disabilty through my employer. I have signed up for SS Disability and am waiting for a decision. I fully expect a denial based on what I have heard from others. Then I will get someone to appeal it for me.
My employer has been very generous as they are letting me have long term LOA (up to 2 yrs)so that I can continue to get benefits through them. That took such a burden off my shoulders! At least I know I will have medical insurance.
I just take it one day at a time. I walk as much as I can and pace myself the best I can to get the necessities accomplished every day. My house isn't as clean as I would like it to be and I don't cook the meals that I would like to but we are getting along. My husband is patient and very good to help out. I am very thankful for his understanding.
I hope that you all have more good days than bad. God bless you all.


January - December 1

Hi little joey -- glad you are doing OK and have the LOA and insurance. I see you switched over to Effexor. You might want to do some google research on this drug before you take it for too long, especially since you are seeing no positive effect. As you know, for SOME of us, the antidepressants can cause a lot of problems down the line - we develop tolerance, need more, then they stop working, then we have to go through withdrawals as we switch to another drug or stop entirely.

In my reading, I've seen some bad things about Effexor - like that it is one of the hardest drugs to quit. I know someone who is on it and is terribly depressed and having worse pain. It might work for you, but I always think it's good to be aware of the possible side effects, since the doctors usually aren't.

And… I have a sign by my front door that says "Creative minds are seldom tidy." I can't do what I used to either, but a perfect house is not the MOST important thing in life.


Neenez - December 1

Hi January, I've been on Effexor for years due to the severe anxiety I suffer from. It's a Godsend for me. I have not had any problems with long term use. If any, it may not work as well as it did in the beginning only because I've been on it for so long. But actually I can't tell any difference. But I've had other anti-depressants and none of them were easy to come off. I must come off all of them much slower than the average person. As long as I can get out of bed in the morning, it's good.



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