[scrapnini]

My muscles are always constantly stiff and sore, especially in my neck and shoulder... Always feel as if they are in a vice grip. My neuro has had me on 2 baclofen 3 times a day and this has done nothing to release them. I have been trying to do the stretches he recommended for them, but they do nothing but make them tighter and more uncomfortable. The nurses in his offices but ignore my pleas for help. I am in so much pain I cannot take it. I can barely move because of how stiff they are. I need an actual suggest something on how to do something to release this. I am actually jealous of those with leg tension because my back is so sore I cannot get into any position that is even mildly comfortable... It effects my sleep and has me crying and angry all the time. I don't know if anyone has ever been in this much pain and I cannot take it. I pray for death, because at this point I think it will be my only relief from this pain and how miserable I am... The only thing the nurses seem worried about is the fact that I may kill myself... which I won't, but I do want to die from this pain.

[Erika]

Hello scapnini

Welcome to our community. My goodness it sounds as though you are being put through the wringer and I am so sorry that you are going through this; especially with the sort of treatment you are having to endure.

I'm wondering if you have had an MRI of the brain and more specifically of the spine. The cause of much of what you describe with respect to the pain and spasticity may be revealed with such a scan.
I have had similar experiences with transverse myelitis as well as a variant form which did not affect a whole transverse section of the spinal cord; termed partial transverse myelitis.

It may be very helpful to have someone who understands the impact this situation is having on your life to go with you to your medical appointments; as they can speak up for you when too much is coming at you from all sides.

I hope that things settle down for you and that you get the relief and compassionate care that you need .

With love, Erika

[scrapnini]

After about two weeks of this relapse they did an MRI on my brain and neck... I guess the problem stems from an active lesion on my neck; they have not done one of my spine. I am now seeing a MS specialist (supposedly the best in the area, of coarse he is in his mid 70s, and very blase in his attitude). My mother has been with me to all my appts, and puts her trust in what they say. I love her to death, but sometimes feel like she isn't being the best advocate, and I feel so crap all the time I just get angry. I really have no idea what is going on in my body; I get stressed and I smoke, which I know is not a good a thing, but the only thing from my old life I have left. Just so frustrated at not feeling I have any power at all (at least I can sorta type now without having to look at the keyboard and hunt and peck to)...So yes, I see some improvements (some very big ones, ) but the pain is just so bad I cannot get my head around it, it is all I think about and it is effecting me getting better... I just want it gone, or at least controlled in some way. Supposedly the gal who called to confirm mt appt. for my infusion is having a nurse call back later, (she was of no help yesterday... he docs office hasn't even filled out the paperwork for my medical leave from work which was due 10 days ago... so now I am scared I will lose me job, even if I do get better from this ; and I love my job). Everything is just horrible. I have no idea what to say to the nurse if she calls back, and likely she will tell me there is no more to be done, and we have to wait and see what happens with the Tysabri. This wait and see attitude is driving me mad... I am a take action type of girl... I always take action.

Also,as an English major, all these typos I am making is driving me crazy... I am not 40 grand in debt for my college education to make stupid typing mistakes... God, this whole is insane making.

[Banburycross]

Just wanted to say I'm sorry to hear of your intense pain. I empathize as I suffered for over a year praying every night to please let the pain go away and let me die in peace. All my joints froze on me, had the left side shuffle thing going on. do not know if it was ms related. I'm in midst of diagnostics. My pain was helped by neurotin low dose, but it stopped working last July. I only hope you listen to you body, as I found complete bed rest, and I incorporated a 1 mo juice fast, with a bit of chx or scallops low/no fat regime. (had to as i passed out i was so weak, drs doing nothing) This was opposite of what drs had advised. Keep telling me exercise would either make me better, or I'd get worse without it. I had to fire and walk out on a couple of pt. find a good one to work with, I did. Build u strength back as you feel comfortable. Hope u find a pain med that works for u.. Likely start a über low dose as u can always add. Different manufacturers, same drug, different reactions.

Pardon if Ive rambled.. I wouldn't wish that type of pain on my worst enemy. There's a new pain management treatment, non drug, was offered me but my pm dr said not to. It was 2 hr drive for me so I didn't enlist. Be happy to share info with you if u like. (have to locate email) the natl lyphoma society hooked me up to the procedure. My reg drs rot.

Do hope you find relief soon. Kat

[scrapnini]

Thanks for your words. A juice fast wouldn't work as I am also a recovering anorexic and everyone makes sure i eat. I can no longer stay put, yesterday I SNUCK out of the house and walked to work; nearly dying in the process.

Please tell me you finally found relief and that you are living a normal life?

[NurseNancy]

dear scrapi (can i call you that?),

i think for right now you need to hang in there with this dr. but, i would make it a priority to find someone else. your local MS society can help with referral names.

i was in intense muscle pain and my neuro referred me to a rehab pain dr.
he did a lot for me. it took a lot of work but between meds and PT i got a lot better.

i won't lie. i'm still in a lot of pain but i can tolerate it. however, the more the day goes on the more i hurt. heat helps me. i get wkly massages too. sometimes meds just don't work the same for people. you may need to try some different muscle relaxants til one works for you.

you can always write your dr a letter (typos and all) and maybe you'll get your note and some attention. tell him how you feel and what you want from him.

keep us posted please.

[scrapnini]

I want to be better. I don't want to hurt. I want life to stop feeling like a nightmare. Nothing feels real... nothing seems real... I am just living in a complete nightmare, and no one... not even others who are supposed to know what this is like, seem to understand what I am going through. Just so sick of having no control over anything.

[SallyC]

We all know and empathize with what you are going through. Most of us have been where you are. We are all struggling and understand your plight.

[ewizabeth]

I went through a bad couple of years with stiff back and shoulders and it was excruciating at times. One thing I learned later was standing and doing very slow stretches (like tai chi) helped a bit. When I had a desk job it was worse. Now I have a job where I stand all day and I never, ever have the stiff back. I know there is a connection somehow.

[Bort]

Wow scrapnini I could have written your post with the way I have been feeling recently, except my problem is in my lower back and butt/hips. The pain can be excruciating, not even oxycodone was touching it (the GP prescribed Panadol Forte, which is Tylenol-3 over here...I laughed). Diazepam can help somewhat, both with the pain and the stress it causes, but of course you need to be careful taking that in combination with painkillers.

I hope you find some relief, I completely understand what you mean about it making you miserable. It turned me into a horrible person. Mine is starting to relent, whether it is on its own or because I am on Lyrica now, I'm not sure.