PLS'ers and pain

[mookyred]

Just wondering, I've had symptoms of PLS since 2002, didn't do anything about it until I started getting stiff in 2004. Took me 4 states and 5 major medical facilities to get a diagnose....a few misdiagnoses. I have no pain with this disease. Do others experience pain? I have arthritis throughout most of my body and osteoporosis on top of that. I have to pain, except for minor aches. I'm just curious, do any of you have real bad pain? This is year 10 since first symptom. I got to an ALS clinic and have been stable since I started the clinic in 2008. So my progression is slow, thank God. Many prayers have come my way. I am blessed.

 

[johnnyliverpool1]

well am umn ..the symptoms the spit of pls.......and theres pain alright....if u have spaz theres gotta be i reckon.......and if anyone says they aint in pain then am snooked, mookyred......johnno

 

[kmendsley]

Well I have real bad leg cramps...but I don't have PLS. ALS they think...maybe...or some neuorpathic progressive disease of some sort. I guess I should say I have pain left in the muscles I can use when they are spastic. Count your blessings that you don't. For those that do...heat pad, and massage does wonders.

 

[johnnyliverpool1]

kmendsley.als.ls no pain i seem to recall........but i am dull.......am not sure.....am not complaining over much about pain given what little i do know about this lot..........johnny

 

[mookyred]

Johnny....your name sounds familiar....do you go on another support site? I haven't been on sites since 2010....just thought I'd see how things are going with newbies, and share somethings I've learned. Sometimes I feel like I may not have PLS compared to what other folks on sites post. I have every symptom an progression seems the same as a few, but no pain to speak of. The ALS clinic does listen to what I have so say, especially about aqua therapy. I tell them what I will take and do and they are satisfied with that because I do well. I walk with a cane when the weather is cold. I go to Florida half a year and don't walk with cane at all because the weather is always nice. This damn disease seems to progress differently in everybody. Don't get me wrong, I've had my share of falls, but they are usually my fault for not paying attention. Weird eh?

 

[AKmom]

At the begining I didn't have much but as I progressed into a spastic mess, I started poping tendons and injuring myself. My muscles always ache hard at the end of a day at the beginnig, but now they hurt 24/7 unless I just lay around and do nothing for a few days. Well I cannot lay around and do nothing! The more activity for me seems to aggrevate the pain level. I have some arthritis, but its not that bad or painful compared to the constant ache. And now that my feet have started to deform because of spaticity and weakened muscles, they are very painful to walk on. Some days I just cannot walk at all on them. I also have alot of pain in my hips, especially if I walk alot or sit upright alot.

I live daily on about a 6 or 7 on the pain scale. Then if it hits 8 I take a norco or ultram. That doesn't remove all the pain, it just brings me back down to a 6 or 7. If I have a muscle that is inflamed from over use, I take 3 ibuprophen. That usually cuts the pain pretty good. My thought on the pain meds is that I refuse to take them daily. Since its a proven fact that your body can grow tolerant of them and you keep having to up the dosage to get the same effect as you first did. Thus, I have learned through the years to manage my pain as much as possible without the meds, and take them when I really need it.

Sometimes I use topical creams such as bengay or mineral ice on muscles that are very knotted and muscle relaxer did not help unknot them. Just massage that one those really painful knots and you dont feel them after a few minutes. My doc is always amazed at how much pain I tollerate. He and the pain doc wanted to put me on a patch a few years back. But I know from watching others people that are in my extended family, what that means. It never stops there. My sis went from taking 4 narcotics daily in the beginning of her ordeals (she has had lots of spine surgery from injuries) to now she has a pump, a patch and takes 5 narcotics a day. She is so messed up in the head too from it.

I can not speak for others with pls, we all have our own progressions. But I definately have pain!

 

[mookyred]

I am so sorry you're in so much pain. I just wonder if some day it's going to hit me. I've been blessed so far in the pain department, but that could change with very short notice I believe. It is a very strange disease. I'm with you on the pain meds. When I had a fall and fractured a vertebrae and boggered up every vertebrae in my lumbar spine, I really then didn't have too much pain and only took ibprohen. I thank God everyday for sparing me the pain part for so long.

 

[Tokahfang]

An informal survey of the HSP/PLS list suggests that about half of PLSers have a lot of pain, the other half have almost no pain at all. An interesting correllation was that the half without pain responded well to PT, and the half with lots of pain responded poorly to PT. It is almost like there are two different great strains of UMND.

I am in the "lots of pain, PT is bad for me" camp. I'm 17 years in, and don't remember what not-pain was like. I'm kinda happy about that, it'd be worse to know what a pain free day was like and not be able to have it.

 

[johnnyliverpool1]

no mooky...never been on another site.....am on here waiting for the smoking gun....a yes or a no...

 

[old dog]

It's difficult for me to say whether the pain I have is PLS related. Some days I have no pain; other days, my back goes into spasms if I stand for five minutes or less. My right hip is quite painful at times--seems to be weather related and/or bursitis/arthritis. I first developed a spasm on my right side (from my neck down the length of my body and right leg - muscles tightened and would not relax) 25 years ago. This was diagnosed as back trouble. Took pain meds and muscle relaxers for a week and then went to PT and was fine. Have had occasional back problems since that time--nothing bad enough to seek medical attention--just took some ibuprofen and tried to get some rest. Now I suspect that the back trouble was an early manifestation of PLS, but who knows. I just don't know if it is possible to determine which type of pain can be attributed to PLS.

 

[mookyred]

I pray it's a no. You are quite the witty one...lol

 

[mookyred]

I knew your named sounded familiar. I just looked back and saw a johnnyliverpool without the 1....lol....is that you also?..Quite a coincidence! You always were a bugga!

 

[johnnyliverpool1]

well me mooky..that sure was me....a bugga i sure is...so the tell me.....pussy in the well..who put em in and who pulled em out...they know nottin and we know nowt,,,,is pls for real......or to rare to be there.....johnny..

 

[Zaphoon]

Pain! Everyday but I've gotten use to it. On a scale of 10 if flux's from 3-7 and stems from stiff muscles in calves, hips, back and forearms.

I've been seeing a neuro-muscular massage therapist for the past several weeks and as soon as it is rubbed out, the tightness comes back.

 

[mookyred]

I don't know the answer to you pussy question....but I know PLS is real....it is very rare. I've spent years wonderin if I really had it. It seems to me that it is a very disease that affects everyone differently. Sure, there could be misdiagnoses. However, I've looked for years for another diagnose, and can't find one. So I accept it. There's no test for it, I have been fortunate to go to major medical facilities, where they tested for every possibly rare disease...notta. They just rule out every other disease. It took me a long time to be diagnosed. Hey, look at it this way...every other disease I thought it could be was incurable too...so wtf!