Hey honey...I can relate to that completely. Being that my MS is "in-active" though I can't say that it is MS related or not but my gp put me on Amitriptyline (Elavil) 40mg before bed and it is the ONLY thing that has helped somewhat with the pain. I had to cut back to 20mg just before I went on vacation though because my sleep pattern was all messed up and I have to say that the pain is coming back despite what the gp told me. She said that because the pain was relieved on 40mg the odds are that it won't return if you lower the dosage. Seriously, that is what she said, I wanted to ask her if she is living in a fairy land world but thought better of it since she does write me my prescriptions. I hope you find something that will relieve this pain though because it is very distracting and aggravating and I found that nothing like heat or cold made any difference in the level of pain. I even tried Oxycontin and while it made me feel different about the pain it did not relieve the pain. Neither did Topamax, Lyrica, Gabapentin, Tegretol...that's all I can think of now. I would bring this to the attention of your family doctor though and maybe he can help you out with something for now. I wish you all the luck honey and please know that my thoughts are with you ok?
This is going to be a post to you with alot of questions. I apologize for that, but want to get a better understanding of what you are feeling, so forgive me in advance..okay?
Can you explain more about the feelings you have in your legs? I understand the "toothache" feeling...do you have any sensation of tightening of the muslces, do you get any sharp pains? Can you feel any distinct spasms? Do you have more spasms after any exercise, do your legs ever feel like you are walking in concrete, (heaviness?) do you have trouble walking on uneven surfaces, such as sand or large gravel and is your pain made even worse when you are tired? Is one side worse than the other?
What kind of medications have your doctor's tried so far? In answer to YOUR question, yes this leg discomfort can be caused by MS...unfortunately, it can be caused by many other things are well, especially trouble in the spine.
I want to help you as much as I can, by sharing what I have tried for my leg pain. That's why I have asked all these questions. My legs are what bothers me the most in my decade old case of MS. I really do want to try to help you, if I can.
When I first went to my DR with my problems, which was extreme fatigue and aching heavy legs and arms he thought I had polymyalia which is why my thigh muscles ached,
He done some blood test and they came back normal, but he diagnosed polymyalia any way.He put me on steroids, which helped,he said because I had a good response, with the steriods it was polymyalia.
Then I went back several more times telling him about the tightening and tingling he told me to continue taking the steroids.
Back to the DR again because i had irritable leg when i went to bed he gave me some tablets (people who suffer with parkinsons take them) they made me ill so I stopped those.
Then back to the DR and i told him im getting tingling, heaviness, cold legs, cold arms,pain behind the eye etc this is when he sent me to the nuro who thinks there is nothing wrong with me,but has arranged an mri and a neck scan.
Since coming and staying on the lower dose of the steroids I have been in pain.
Ok for example once im up and dress if i feel good ill pop to the shops which is about 7 min walk into town (for normal walkers) takes me about 15mins on a good day.I can go into one shop and thats it im aching my legs feel like bricks my arms feel like there on the floor and to walk back one day took me 45mins with tears running down my sorry little face.
After exercise, (the only exercise i do is yoga) my body ie legs arms feel good but after a couple of hours its all back which makes me think its my back and not ms.
1.do you have any sensation of tightening of the muslces, YES
2.do your legs ever feel like you are walking in concrete, (heaviness?) YES
3. do you have trouble walking on uneven surface YES
4.and is your pain made even worse when you are tired? YES YES YES
5.Is one side worse than the other? MY right side
6.What kind of medications have your doctor's tried so far? steroids co- dydramol and alendronic
The pains in my legs is more of an ache but the worse pain is my buttocks that's pain and they get so cold its untrue.
I hope this helps just ask me the questions and ill try to answer them.
I Was going to yoga today but I ache to much and my legs feet and arms are like blocks of ice my vision today is not great im just feeling low and sorry for myself.
Alot of what you describe is also what my legs feel like. Although mine never feel cold, I do have one area on my outer thigh where I have peripheral nerve damage that seems to stay cold to the touch.
You may have a couple of other things going on, but alot of what you have described to me, in the form of pain in one eye, more leg pain on one side, etc., remind more of symptoms of MS. Do you have MS? I don't know that, since I am not a doctor. You do need more of a follow up in your testing. If you have relapses and remission of symptoms, I would think more along the lines of something neurological. Especially possible MS.
The only thing that trips me up, is that you say that you feel alright in the morning. Am I correct? And the leg problem gets worse as you start to move around? What did your MRI's show and have you had one of the spine with and without contrast dye?
I too, have Restless Leg Syndrome, although I experience these sensations in my arms also. Doctor's now call this Restless Limb Syndrome. In the population of MS patients, RLS is more common. I have taken the drugs like Requip and Mirapex, but they just don't agree with my body and make me sick. I have not found anything that completely controls my RLS. It drives me nuts.
I always tell people if they are not getting the appropriate answers from their current doctor, to find another one. If they can't find what's wrong, we need to ask our doctor's if they could help us find a doctor, that may be able to help us. No one should have to live in Limboland with no answers. Somebody has to be able to tell us what is causing our problems without it being some diagnosis that is a catch-all without some type of treatment.
Before I get up I have to wiggle my legs to make sure there working because although i can feel them It feels like im not going to be able to use them.
I then sit at the side of the bed put my feet on the floor to see if they are going to work,do you understand that.
If I woke up one morning and could not use my legs it would not surprise me (you would be able to here me scream from my house to yours with fright) when I get up my leg are very weak and shaky its only after iv been to the bathroom got dressed the pain and ache start to set in and get worse as the day goes on by 2pm the ache and pain is quite bad weather i have done anything or not.
The reason why I said I don't feel to bad in the morning is because its minor to the afternoon, and we all get use to certain pain and don't class it as a problem but of course it is because "normal people" don't have this if It did not get worse by the afternoon then I would be moaning about the mornings hope that makes seance.
My DR wants the Mri to rule out Ms And the neck scan to rule out mini strokes the mini strokes came about when I told him about my face feeling (not looking) as if its drooped and the tingling that I have on my cheeks now on my lower lip.
If I don't get anywhere with this nero I am going to find an nhs private one I cant live in limbo land its depressing not knowing.
People say to me but you wouldn't want MS of course i don't but i want something for what im going through and at this time i don't care what iv got just someone tell me then i can hopefully be more positive and get on with my life.
I now walk with a stick to steady myself and to take the weight of my right leg it does help but it aches my arm gheeee cant win.
I know how frusterating and painful this is. Im fine for a little while in the morning, and then its basically down hill the rest of the day. Most people even family members dont believe ...so you suffer in silence. Because we look healthy , it seems as though nobody believes the real pain and embarressment we suffer. A tooth ache is a good way to describe the pain or its like... after someone beat on your legs with a hammer and your legs throb. I think Drs dont understand this cause they dont have this manifestation of pain personally. Walking like an old crippled man at times they think its cause of something we did or didnt do to cause this to happen..
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