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notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,605
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Hey Guys

I'm over here because the stuff going on seems to be all UMN related, and I'm hoping you all might be able to tell me what to do.

My legs are going nuts. To the point I seriously just want them to die. I can't stand it. I've taken 40 mgs of Baclofen every few hours for days. (And am almost out) Morphine isn't helping. Valium isn't helping. Zanaflex isn't helping.

It's worse than pain--and I can't describe it. It's like spasms on crack or something. I'm going insane.

To the point I can't think straight. I mean, I can't spell simple words. I'm a writer--and I can't write. The ONLY relief is when I drug myself to the point I simply sleep. And, with my narcotic tolerance, that's a LOT.

4 baclofen, 3 zanaflex 30mgs of morphine and percocet and a handfull of ibuprofen aren't helping. I am in bed with my legs elevated--because walking simply hurts too much.

Remember, they don't know what's wrong with me--but my legs are and always have been UMN stuff--cramps, spasms, hyper reflexes, positive babinski in both...and doc doesn't know why.

My arms are the opposite. My left is so bad, I can barely type coherently. I can't do simple things like clip my nails even now. File them--nothing. My daughter has to lift, open anything--including my beloved Diet Coke.

How can one half my body get so weak and the other half be in such a spasm I?

Any suggestions on what else I can possibly take? I even tried my ex-roommates bottle of Vodka with a valium and morphine chaser the other night--nothing stops it.

Enough nyquil and valium and zanaflex and I can sleep a few hours--but not more than a few at a time.

The amount of drugs in my system, I should 't even be able to put a sentence together--but all I want to do is scream.

Would PLS cause this kind of thing? No swelling. No calf pain like with my blood clots (I considered it because I've been out of my coumidin a few days.)

It's like restless legs on steroids or something. I'm up for anything at this point. I can't go to the doctor--I simply can't pay the copays.

Our free clinic will not see people with medicare.
 
My God - I am so sorry you are having all this terrible pain. I have no advice except get to the doctor--to Hell with the copays. Be open with the medical people about what you are taking.

Does your state have a program for lower income people that might pick up the copays? I'm on a fixed income myself so certainly understand this problem. Hope someone else has some better suggestions.
 
I'm sorry Patty, would a warm bath with epsom salts or magnesium in it help at all? That's assuming you can still get in and out of the tub by yourself I know. I use alternative methods for my pain and minor twitches, such as Reikki and magnets, but I don't think you're going to be helped by them at the moment. Would a heating pad on the worst area help? I'm grasping at straws here... can you call your primary care doc and see if they have any samples they can give you for some relief?
 
notme....am not gonna humour you here.......your on a coctail of drugs that are doing more harm than good.....and you want more...you gotta fight back....morphine is highly addictive and your always gonna want more....go get yourself dried out tough as that will be....drugs aint making you feel better now anyway, are they....you wont be worse of ......drugs are dished out too easily.. look at the recent high profile deathsrelated.....get back to scratch and start again...find a better way to manage...you can am sure......the answeres not in running to the docs for more...so get a grip of yourself pull your finger out and do it...johnny.
 
You know Patty, johnny has a good point in that maybe the drugs are making it worse not better... sort of a backlash/boomerang type of thing. Especially considering the stress you're under, it's understandable that it's all getting wacko on your body.

Has any local agency been able to help you out yet? Try calling your state rep and see what happens!
 
I have to agree with Johnny, Patty. I'm so sorry you're going through what you are but I think you're taking too much medication, especially since you're not feeling better. For example, we were told by our ALS Neurologist that they didn't like prescribing more than 80 mgs of Baclofen per day as after a while it doesn't work as well. I don't know if that applies to everybody but still. I can say that Bob suffered some terrible full body spasms and the only thing that helped him while he was experiencing them was low dose morphine (very low) and of course the Baclofen. He didn't suffer with them for too long though. I'm not sure how the medical system works in the US and I know insurance varies, etc. but there has to be somebody that can help you more than whoever is "helping" you now. Take care of yourself - mind and body as much as you can. I hope you can find some kind of solution to bring you some comfort. Yasmin
 
I am in agony too. Nothing helps anymore. I takeep Baclofen, Zanaflex, Neurotin, Zoloft, for mine. No Morphine. Massage And hot tub helps a little. I wither in agony an dc think about suicide all the time.
 
Patty, I have no helpful suggestions, but like the others said, be careful medicating yourself like that. Sounds like way too much Baclofen. The MAXIMUM DOSE is 80 mg a day. You mix that with alcohol, morphine and your past history of stroke and it's a recipe for disaster. You shouldn't mix all those meds without a doctor overlooking it all.......I know it's easy for me to say, because you can't afford to just shoot off to the doctors and loathe them anyway.

Personally I would overcome my loathing of ER and go there. You should not be suffering from all this without help.
I am sorry I don't have any more ideas. You really need this to be sorted Patty, you need more help toward a diagnosis.

Wish, I was there to help. It's times like this that I hate that the forum means everyone is so far apart.:(
 
I've been on morphine for years--about 10. I've had the dosage increased once in all that time. I always have made it just 'work'.

I don't take the amount of drugs I took today and yesterday every day--heck I don't have enough of any of them to do so--which is why I posted to see if anyone knew what could be causing it.

My tolerance to medications is very high--which is why I haven't asked for increases--I don't want to get to the point that I have to take higher and higher dosages. I started at 15 mgs and it was upped to 30 after the stroke

The morphine is mostly for severe back pain--and due to lack of funds--I've cut myself down to 1 per day--(fro the 3 I'm supposed to take)

The last few days-the pain has just been increasing too much. I live in pain--as many of you do--my pain meds aren't intended to stop it--but to make it controllable.

I've been on 30mgs of Baclofen since last year (per day--10mgs 3x a day) Today, I just took a bunch and everything else I had--just to make it bearable. It hasn't.

I have a daily cocktail of 14 prescritions--I make due with what can afford--and rarely take as much pain medicine as I'm allowed. There is little doubt I'm physically dependent o them. Not after all these years.

I never researched Baclofen--but I thought it was supposed to stop spasms. Valium used to. Zanaflex helped, too (the baclofen and the valium were prescribed by the neurologist--with full knowledge that I was already on morphine)

I honestly don't normally quadruple the dosages of medications.

A very sweet person offered to help me get back to my doctor in Tampa. I'm going to email the doctor and see if she has any ideas to make things better.

It's almost midnight, I've had very little sleep in days. I'm honestly reaching the end of my ability to deal with increasing pain.

I wanted to see if anyone here had this kind of pain from spasms and cramps that nothing helped.

I considered the hot tub in our complex, but don't think I can do the stairs to get to it. I can't get out of tubs anymore. No arm strength to get out of the tub. I can't use my arms to climb out, and showers aren't helping.

I'll just have to see if it stops on its own and wait to see what the neurologist says if she emails back. She always has in the past, so I imagine I'll hear something tomorrow.

I don't do ERs. I detest them. It's getting to the point I might not have a choice.

I'm sure the amount I took the last couple days wasn't smart. No Vodka today. I hate alcohol, which is why we still have a bottle a roommate left almost a year ago. I hoped it would knock me out along with the pain medications, it didn't.

I'm almost out of my baclofen and zanaflex and valium--but have a few left of each. I need to make them last.

I've never tried magnets or anything like that. I have a massage hospital bed--but it's not helping either. I'll live. It sure can't get worse. The only way to go is up.

I'm sorry-cn--with pain that bad despite what some might think--you need pain medicine. I hope you can get something that works for you. I can relate to the thoughts of one way to be sure it ends--my problem is I wouldn't do that to my daughter. I've considered it--more than once. With ALS diagnosed you can get pain meds. There is no reason for you to suffer. I'd PM but you have 't been here long enough to have enough posts. Hang in there.

I'm going to try the whirlpool, I think. My daughter can help me up and down the stairs tomorrow. it closes at 10.

Excuse any typos my contacts aren't doing so well and it's hard to see--and getting harder to type.

I really don't think this is all in my head from stress. I know stress does strange things to bodies--but all it does to me seems to be to make my blood pressure sky high. My BP gets very high with pain and stress. Even I'll go to the Er if it hits 190 though. it's not that high yet. it's still in the 180's--which is not abnormal for me in high pain. My stroke was caused from clots--not my BP. Everything I've taken would lower it--not raise it, I think.

Thanks for the suggestions. I'll try the hot tub. I'm not holding my breath at finding any answers as to the cause. But Dr. K is great--if anyone can, I think she will. No point to doubling pain meds---it simply makes no difference, so why waste it.
 
Patty I have to agree with everyone here. I do understand what your going through though. The only difference we have is that after I went through a ton of drugs that almost killed me, I had mad a decision to learn to live with a certain amount of pain. I believe that is why I am still alive. I do have the drugs but I use them sparingly. On thing that helps me with the jumpyuncomfortable spasticity legs is have someone massage them with mineral ice or bengay.

I do hope you consider what we are saying about too much drugs. Get to a doc to be sure its nothing that will kill you.
 
Patty , this may be a dumb question, but it hard when I am not there, butvare you sure the pain is coming from cramping muscles and isn't claudication. I know you will know the difference so it's just me thinking.

With this level of pain, I really think you need medical help. Calling your doctor is a great idea. Do you have any Valium left?

Praying for you my friend. I am pleased someone has offered to help.
 
Oh Patty, I just hate to see you struggle like this. You do have options, not liking the ER doesn't mean you just don't go when things get so bad. Nobody likes the ER but when you reach a point that you can't cope with daily pain and life you need to just go. If I lived closer you know I'd kidnap you and drive you there. Hugs and Love!
 
Not sure about the claudication, Aly--unless it's from my spine, which is shot. I'm not so much limping as waddling when I walk. Walking is just difficult. My reading suggests that with this kind of pain, it should get better with rest--this definitely doesn't.

I have only 5 valium left. so, they are for 'dying' days, not pain days. Tampa doc is the only one that writes for them. I haven't been to the pain doc since January. I tried them day before yesterday, they didn't help.

AKmom--normally-I don't take pain meds to get out of pain--I take them to keep it manageable. I can honestly say I haven't been pain 'free' in years. From what my pain doctors have said, the goal of pain management isn't pain free, it's pain lite. When it becomes hard to deal is when your every thought is consumed by hurting. I'm not in screaming agony--just whiny agony.

I did sleep about 8 hours though. My cocktail of pills at least accomplished that. Finally. it was dumb, though--because I took days worth in two days--so will now run out sooner than I can refill them.

I am sending the kidlet out today to get my warfarin. I can't take the ibuprofen anymore--it makes me sick. My kidneys shut down when I was on ibuprofen and/or aleve years ago--god, ten years--it's where pain management started. My kidneys can't filter the ibuprofen or aleve--so I was told to never take them again. With OTC meds not possible--RX meds were prescribed instead. I fought pain pills for YEARS before giving in to them.

There comes a point where I'd rather be addicted to pain meds than to be living in pain constantly. Shrug.

I keep wondering if this is something like PLS because of the uMN stuff--or if it's a worsen9ing of my back issues. It's not sciatica--I've had that. This is pain in the legs from the hips down.

Gonna try whirlpool today.

Still don't know if this is common in UMN issues or not? ANYONE?
 
Before ALS attacked me I had (and still have) various veins, very poor circulation and lower back/spine degeneration ( i think thats what back Dr said) ANYWAY my legs would ACHE soooo bad & cramp & feel prickly & throbe from pain & I would cry from the pain. On the really bad days I would lay on my stomach and my husband would rub lotion on his hand and using the heel of his palm he would start at the top of my leg and rub (with some pressure) DOWN in one motion (not stopping) all the way to & on the souls of my feet. Then he would start there and go back UP. Then he would switch to the other leg. Switching bad and forth about 30 minutes total on the back of my legs NOT the front. At first while he was doing that, it made my legs feel worse & i even would feel alittle sick to my stomach. After about 10 minutes all that went away and it was wonderful. You might have your daughter try that on you. I didnt mean to hijack your thread about my experience but I didnt know any other way to tell you what MIGHT work.
 
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