I need help with triggers & pain meds

[maryalice40]

MCTD & possible MS..

My neuropathy sensations get worse with heat or particular medications. Last two that have triggered it are zanaflex & mobic.

The tingling is mind boggling, I can't stand it, and it makes me constantly have an urge to pea when it's acting up.

The more combination of medications that I use, the worse this seems to get.

Cannot cope with my fatigue, my muscle pain, or this neuropathy anymore. I've had it..

Please help me.. Do you think this is classical of MS that my medications make it worse, or could it be that I just cannot handle taking medications anymore??

[maryalice40]

The neuropathy, sorry, it does cause sensations in my pelvic area, it isn't causing spasms..

[maryalice40]

I can go to a pain clinic, if I wanted to, but I don't know that I want to. I don't see why my own doctors can't put this under some control. I figure prednisone is about my only choice right now, and my neurologist has mentioned it a few times, but yet to prescribe it.

I guess it could be from MCTD. I don't have a rheumatologist anymore, I left her office crying my eyes out after her refusal to do anything other than give me plaquenil. There's no one else here I can see with my insurance.

One thing really making my mind twirl is these sensations, which also bring on pain if I'm not taking neurontin, and I feel this stuff constantly and everywhere, but I have no numbness or loss of sensation whatsover. I did have some muscle weakness but the kind that did not cause loss of strength and plaquenil stops it..

So is it normal for neuropathy to not cause any numbness or loss of sensations, or loss of strength??

I just don't know what to do about being tested further. What test is going to show why I have sensations, without something serious going on there? Would it be worthwhile to persue a diagnosis? My neuro says my symptoms are clear cut of MS.

The neuropathy isn't causing sensations in my bladder, it's causing pressure in my pelvic area.. Kinda makes me wonder if I oughta have my past pelvic surgeries explored as a possible problem. I don't know. I'm so confused.

Sometimes I can't tell if my medications are making it worse, sometimes it's more than obvious it aggitates things.

[HVAC]

The problem is medication is not one size fits all. Doctors are busy and usually have a certain arsenal of medications for there patients with common problems. If they do not work they do not know what to do. Mine wants me to go to a pain clinic because he does not have the time to research or tweek medications for my pain. Pain should be addressed regardless of a diagnosis or lack there of.

I can't afford the pain clinic so for me that idea is out. May be that might be an idea for you? I do not know.

Alex

[twopack]

Hey MaryA.  You sound desperate and I can relate to that because my last few weeks have been nearly consumed with the pain of spasms, neuropathy and the emergence of a new inflammatory process.

I too have had trouble getting any of my docs to prescribe anything.  They didn't seem interested in getting me into the office either (at least the office personnel made it seem that way).  The doc who finally saw me recognized an acute inflammatory autoimmune process.  He prescribed a course of Prednisone.  That has calmed things to a somewhat manageable level until we can figure out if this is something other than MS (like SLE, MCTD, RA etc).

I relate my own sad story because your heading mentioned mixed connective tissue disorder.  I don't know as much about these other diseases as I do about MS but I am wondering if you aren't in a flare of symptoms that needs a burst of steroids to pull it into control.

I'd guess that the constant urge from your bladder is related to spasms in the area.  Once set off they can go on and on and on..... as you obviously know!!!  Any chance you have a UTI?  You say you have a constant urge.  Are you able to actually pass enough urine to feel like your bladder is empty?

I'm also curious if those meds really make things worse or if they actually are failing to help and therefore the symptoms are free to expand and intensify?

I told my husband that life wouldn't stay worth living for long unless I could find some relief from this new hell.  I hear that same type of desperation in your words here MaryAlice.  My guess is that you aren't getting much sleep.  It doesn't take more than a few sleepless nights to wear a person down to their breaking point.

You MUST make some health care professional HEAR and SEE you NOW!!!  Is there a family member who can advocate for you?  Sometimes you have to be obvious with family AND doctors before they realize just how desperate you are for relief.  I know -- it always feels risky to go to that place.  It's a chance I think you MUST take at this point to get the help your health care team should be leap frogging each other to offer voluntarily.

I wish I could offer something more concrete.  If you think anything here might have merit in your case, don't hesitate to make specific requests for tests or treatment.   Getting the care you need may indeed require a trial and error approach but you can't know what works and what doesn't until someone, anyone! tries some new things.   You just may have to go to an ER or sit in an office until someone gets inspired enough or annoyed enough to do the right thing.

Don't give up on yourself by giving up on docs or treatments.  You deserve better than this and we need you here with us anyways (I'd stomp my foot here if I didn't fear the pain and spasm that would likely follow).

Please keep us in the loop about how this unfolds for you.  We care.  

I'll keep my thinking cap on for you.
Mary (who also carried the Alice suffix once upon a time but lost it for the most part when I outgrew the warm embrace of my family of origin -- still love to hear it from time to time)

[rendean]

Hi Maryalice,

It is strange that the very drugs used in MS patients cause an increase in your general symptoms. Perhaps the Mixed Connective  Tissue Disease is playing a part in this drama that is causing you so much pain.

I'm with Lu, have you discussed it with your rheumatologist and your neurologist? Perhaps together they could find an answer to your current issues.

I feel like Lu.  You so need a hug and a shoulder to cry on  (if your that type) and I wish I had more answers for you. I will do some research and see what I can find. In the meantime I am sending only good thoughts your way and wishes that the neuropathy goes away!

Big Hugs,
Ren

[Lulu54]

Hi Maryalice,
It is horrible to hear that you are having such a bad time with this. I wish I could answer some of your questions or supply some help for you, but I have nothing to ffer.

Have you been talking to the doctor about all this ?  I hope you have a good medical team you can work with, but I'm suspecting that you are struggling there, too, since you don't mention them.

I don't remember anyone talking here about meds making their MS symptoms worse but there are lots of discussions about treatments not working andtrying different meds until something that works is found.

I wish I could reach through the internet and give you a hug or hold your hand - it sounds like you could use one about now.

I hope we'll see you around more,
Lulu