Do any of you suffer from backache due to OT ?

[maria]

Hi everyone,
Although I haven't been diagnosed with OT ,I am certain it is the cause of my balance problems. I have had problems for about 23 years (I AM 52 now). I had a brain scan at that time which was clear but ,the problems continued and ,my G.P. at the time told me I would just have to learn to live with it !! During the last 10 years my balance has got worse. As I have claw toes(I am sure this is due to constantly trying to balance),I asked to be referred to an orthopaedic consultant in the hope that an operation to straighten my toes would solve the problem. As soon as the consultant saw me walk, he said claw toes were not causing the problem. He said my leg muscles were the cause and referred me for an mrI scan of my spine and said that I should also see a neurologist. He asked me whether I have a lot of back pain, which I do. The scan revealed bulging discs. I saw the neurologist a year ago and he said he didn't see the point of putting me through any neurological tests!! However, he did ask me to walk as though I was on a tight- rope which, was extremely difficult to say the least !! I came away feeling that he hadn't really listened to me. Out of desperation I went on the internet, typing in shaking legs instead of the usual balance problems and I came across this site. I cried with relief as I felt that I was reading about myself. I showed my doctor information about OT and am seeing the neurologist later this month. For many years I have felt so let down by the medical profession , to the point that I initially thought they were right when they blamed it on stress. Seeing the orthopaedic consultant was the best thing I did because he could see the problem was real ,not just in my mind.This site has really helped me and I would like to say thanks to each and everyone of you. I just hope the neurologist won't be too offended when I show him a print-off of OT and ask for an EMG test !

[Lynda]

Hi Maria

Welcome to the website! It never ceases to amaze me how similar all out OT stories are. It is such a comfort to know we are not alone.

I do not suffer from claw toes (although my feet ache and ache after only standing for a very short time) - and only minimal backache - but apart from that, your story could be mine! I started suffering with the symptoms of OT 21 years ago and I am now 50, so our experience is very similar. I discovered that what I was suffering from was OT, by searching on the Internet and finding this site and I too sat and cried as I learnt that I was not alone - and not just 'suffering from anxiety', as the doctors had said! It was such a relief and a release, and made explanations to others so much easier.

I went to my doctor armed with the print-off from this website and he was very helpful and sent me to the neurologist in my local hospital who confirmed the diagnosis. I do hope your appointment with the neurologist goes well - do let us all know how you get on.

By the way, my brother lives fairly near Cardiff and, although I'm not often in Wales, perhaps one day we will be able to meet up.

Take care and keep smiling

Lynda

[patty]

Hello Maria, welcome to this site, which I too found a blessing because of all the wrong diagnosis I have had over the years.
I eventually (after finding this site) went to see Dr Peter Bain in London who confirmed that I had OT (my own GP had never heard of it). I have paid for numerous tests & relaxation therapies to no avail, but at least now I can put a name to my condition. I see you have had a response from Lynda who I myself have contacted & it is very reassuring to know there are others like us out there & we are not just imagining out symptoms.
I do suffer with lower back problems & have spondylosis of the neck, I occasionally see a chiropractor which does help but again is costly. My toes claw the floor to try & maintain balance which (I think) has caused a lump under the arch of both feet. Sorry but I am sounding a right whinger but can assure you I am basically a very happy person & would be glad to hear from you at any time, take care & look forward to hearing from you soon.
Regards Pat

[Lorie M]

When I walk for awhile my lower back starts to hurt. I attribute it to my muscle spasms I have to keep steady. I also have bulging disks but the pain from that usually is a bit different. I will ask my doctor next time if it is related to OT. I usually take ibuprofen and it helps so I can continue after a brief rest.
Happy New Year to all!
Lorie

[patty]

Hi Lorie, I have said many times on this forum how I suffer from back pain and also hip pain when trying to support myself, there has got to be some connection here but there is not any medical information to back this up. A friend of mine suffered severe hip pain and was having to use a wheelchair on holiday, she has since been found to have B12 deficiency and now has B12 injections every three months which has made an incredible difference to her, I haven't looked into it very much but I do know it has something to do with the nerve endings not being properly protected (I think). Let's just hope that something can be done to help in the not too distant future for all our sakes.

Take care & Happy New Year, Patty

[Patty G]

Hi Everyone,
I have been away from the site too long. I have back pain in the right lower back muscle if I have been doing too much. It hurts and if I don't get off my feet, it makes me sit down. I find if I have been inactive that I can stand for shorter periods of time before I need to sit down. I, too, had hip pain and was told it was brusitis. It turned out to be a tight IT band and with a stretching exercise my Physical Therapist taught me, I don't have pain there anymore.
I have been diagnosed with hereditary spinal stenosis in both my neck and lower back. I was supposed to have surgery on my neck this past month but the doctor and I decided not to go with it yet. I have three bulging and one ruptured disc in my neck. The doctor plans on going in and removing the three bulging discs and very carefully removing the disc material that is pressing on my spinal cord. He will put metal cages in between the vertebra and fill them with bone marrow from my hip so they will fuse together, he will then screw in a metal plate to all five vertebra. I will have to be in hospital for two to three days and then in a neck brace for three months. The reason we decided not to go with the surgery is that the MRI looks much worse than the clinical findings indicate. I don't have much pain, mostly numbness and pain like when your arm is asleep and starts to wake up.
I also drop things more when the neck is acting up. The lower back pain is caused by a cyst inside a vertebra that is putting pressure on my spinal cord. I have been having a steroid shot into that area of my spine every couple of months and that seems to be working.
The doctor is going to have me have an MRI about every six weeks to monitor the spinal cord in my neck to make sure that there are no "signal changes". I think I understand him to mean that if there is any damage occuring in that area, there is a color change on the MRI. If I get more severe clinical signs or if there are any changes on the MRI, we will have the surgery. The part that really bothers me the most about all this, is that I am not allowed to work out with my personal trainer and my muscles are getting weaker. My husband says that I just don't have the stamina I used to have. I am going to try and explain OT to my doctor and see if he will allow my personal trainer and one of his Physical Therapist to work together and develop an exercise program so I don't have more trouble with the OT.
I wonder how many other OT folks have spinal stenosis, bulging discs, etc.
I am so grateful to Gloria and Jeff for having this site and forum so we can share information with each other.
Patty G from Juneau, Alaska

[Chris]

Hi Patty
I also have spinal stenosis according to my doctor....I have a couple of bulging discs in my lower back which occasionally give me quite a bit of pain. I have had this for quite a few years but didn't really know what it was until I had an MRI a few years ago ....right around the time I started noticing my tremors. I also get quite a bit of hip pain if I overdo it and try to stand in awkward postions too long. Sometimes I have no choice and have to try and stand anyway possible. I try to keep as active as possible which I find very difficult at times. I am also trying to lose some of my excess weight which I know will help my back problems and I hope to try and build up my core muscles a lot more. All this I find helps with the pain. I really feel for you and your back problems although I don't seem to have it as bad as you do. Most of the time I feel pretty good but it only takes a couple of the wrong movements and I am in pain ....which then sets me back for quite a while. I have started doing a lot more pole walking the past few weeks now the roads are free of ice and snow.....I am starting off slowly again so I don't injure myself and will gradually build up my strength.
Hang in there and keep me posted on how you are doing......it is really nice to have thie site to share experiences.
Take care
Chris

[sharonmathews]

Hi, I have Spinal Stenois, Scoliosis, Sciatia and Osteoarthritis of the Spine. In 2007 I had a spinal fusion done with hopes of being able to stand and walk without so much pain. The surgery has not helped at all in regards to the pain I am having. Now I have even more pain. Pain in the lower back, both Sciatic nerves running down the back of the buttocks, thighs, calves and heels of the feet. Having a lot of muscle cramping too in the calves and feet, mostly at night.

When I stand for just a few minutes, if that long I immediately get the shaky legs and severe back pain. I can not lean on something, I have to sit down or my legs will freeze up on me. After I sit in a chair for a few minutes I will be able to get up and walk as long as I don't stop.

It is so nice to be able to talk with everyone here on this site. I am learning so much. Thank God for this site.

Wishing all the best to all my new friends here.

[Lorie M]

Sharon,
So sorry to hear of all your problems. Back surgery outcome is so unpredictable. I do have some minor back problems when I walk too long. Especially if I want to shop. By the time I get to the area I want in a store I have no energy to complete the task. That is usually the time my lower back starts to go into spasm. If I take ibuprofen and rest a little sometimes I can try on clothes. I usually can sit in the dressing rooms so that helps too. My shopping trips are much shorter each year. (My husband says it saves us a lot of money!) Best of luck to you each day!
Lorie M

[Zasm88]

The back pain I have is made worse by the POT, but is caused primarily by degenerative disc disease, spinal stenosis, and osteoarthritis. Pain is a very complicated issue, made worse by stress, depression and other psychological states. One of the many ways I use to deal with pain (in addition to pain meds and lying down several times a day) is doing something which distracts me and helps others--going outside of myself, in other words. There is no question, though, that the primary orthostatic tremor makes my back pain much worse, in a matter of 2-3 minutes. (My PT is trying to help with this, with some success.)