View Full Version : intense muscle pain?????
danat
07-20-2006, 06:26 PM
I'm so confused. My husband may have ALS. He definitely has universal degeneration. We're waiting for the next five weeks to see what happens. This is my question. Five days ago, Dan started having trouble lifting up his left arm, and winces in pain when he uses it a certain way. We saw the neuro about it today. He said that he doesn't think that it's related. Does anyone have muscle pain?? Is that part of ALS, or not. He didn't do anything to hurt it, and yet at the ATM yesterday, he had to hold his left arm with his right to push the buttons on the ATM machine. Thank you.
confused,
Erika
joelc
07-20-2006, 08:42 PM
From my experience with ALS, there is no severe muscle pain, just weakness.
I would suspect that what he is experiencing is outside ALS.
Wish you the best!
TRACY22
07-21-2006, 12:25 AM
why u waiting 5 wks?
Erika Early on I had some intense pain but not much.Soreness more than anything else now. Bwk
TRACY22
07-21-2006, 01:10 AM
So your nero doesnt think u have ALS? why the worry? atrophy bring soreness then some ache then limitations..........but please dont jump to ALS untill evaluated by a "certified als clinic">>>>>>>>>>to many good other thoughts u can be having.....will pray
danat
07-21-2006, 04:28 PM
Thanks all,
The neuro found mild to moderate nerve degeneration throughout his whole body. The Rheumatologist, who's treating Dan for his Rheumatoid Arthritis, consulted the neuro, and told him he felt that he had a bad reaction to Humira (RA drug), since he had a really bad reaction to it. The neuro said that if it wasn't from the Humira, then it would be some type of ALS. Now, the neuro wants to wait and see if he gets better or worse. In the meantime, he's not getting better. With this new arm pain and weakness, I don't know if it's related, because so many people tell us that ALS really isn't associated with sharp muscle pain. It's confusing. He is so tired, he can't even shower and brush his teeth without taking breaks. Does anyone have intense muscle pain in their arm when using it in a certain position?
Thank you,
Erika
TRACY22
07-22-2006, 12:39 PM
If he takes it easy and does not move much for 2 days does the muscle pain go away? (also do you do his stretching..he can not do this as he expends energy )
lunarruna
07-22-2006, 01:20 PM
with muscle loss you can end up with all sorts of associated pains...at times my husband has had intense shoulder pains when using arms, wrist pains, back pains....the muscle wasting puts stress on joints, tendons, and ligaments, plus folks may already have some pre-existing tweak that will be vulnerable once the muscles start going. Would need a PT or someone else knowledgeable to look at just what is causing the pain when he uses his hands. Hang in there....Beth
whitey
07-26-2006, 04:50 PM
I get muscle pain whenever using my arms or legs a lot. I have also developed a problem with my right knee, fluid on the knee and a bakers cyst behind the knee which is probably coming from weakness to the muscles around the knee. All my pain started in my lower back, back of neck, elbows, and has progressed to my arms and legs. Other than my muscle pain I have all the symptoms of als but doctors say I don't have it because of the pain. 2 and a half years for me with no diagnosis. I have never heard of als with extreme muscle pain. Have they checked his muscle enzymes yet ?
whitey
Erica,
My husband has severe muscle pain in the same place as your husband. It is very painful. We asked if the als caused this kind of pain and some doctors tell us yes it does. They are sending a physiotherapist now to help with the arm and shoulder. I asked a woman that we met recently, her husband also had pain with als, she told me to that it was more common than was once thought. The treatment is helping my husband alot. An mri is something that maybe you should ask your doctor to do to see if there is a tear or fluid in the shoulder that could cause problems. Hope this helped a bit.
Sandy.
marlo
07-26-2006, 10:17 PM
Hello Erika,
I have been told that ALS isn't painful too,, but i do have some muscle pain. In fact it has been real bad in my left shoulder. But the doctor says he thinks it's an inflamed rotator cup. He gave me a shot of cortisone in it,, but it only lasted about 6 weeks. So was he right,,, ? Who knows.
Good luck,, and let us know how things progress.
Love and Prayers
Marlo
MtPockets
07-27-2006, 10:45 AM
I have intense muscle pain, but it seems to be an after effect of the spasms going into charley horses.
When I have an esophagus spasm it feels like a heart attack. Talk about pain, out the door man.
This week I had an effect I have never had before, felt like I had been shot with a shotgun all over my body with probably 30 spots of muscle pain that lasted for 2 days. Freaked me out because I usually have a cramp in one or two muscles at a time, not all over. Maybe it was stress related or something. anyhow doing much better today. I have been taking Quinine, over the counter, recommended by my doctor for this. It had been about 2 days since I had a dose because I ran out . My wife got me some more yesterday and today I feel better. Might help?? Who knows.
Can anyone elaborate on the B-12 shots helping with fatigue. I've never tried one but am about to go to the doc to see what he thinks.
Thanks
AL
danat
07-27-2006, 12:15 PM
thanks all
The arm seems to be better now. Dr put him on nsaid. We got an earlier appointment to Mayo for this Wednesday. So happy, and scared. Thanks everyone. By the way, my husband called our primary, and wanted a b-12 shot, too. I'll be interested to know if that helps
greatful you're here,
Erika
caregiver0204
07-28-2006, 06:00 PM
My husband dx with ALS 2.5 years ago has severe pain and cramping, our Dr. states some experience pain and others don't. It is like everything else about this disease it affects everyone in it's own way. Have a great weekend.
LittleHeart
07-31-2006, 09:48 AM
Hello everyone,
I am new here and this thread is asking one of the questions that i had.
My husband was diagnosed on March 8 2003 and from everything ive read
he is on of the luckier ones as he is still mobile.Has lost alot of weigh and muscle but
so far is still walking and caring for hisself.
He hurts in his left side and shoulder constantly,but docter has told us that
its all in his head because ALS doesnt hurt.Needless to say we are seeking the advice of new neurologist.
Im slowly learning about this horrible disease and the more i learn the more questions i seem to have.
caregiver0204
07-31-2006, 09:51 AM
You are on the right track, find a new doctor.
Howdy
08-02-2006, 09:40 PM
The Doctors that tell you that ALS doesn't give you pain don't know what they are talking abought. I had pain so bad in 2004 that I had to go to the Hospital to get a pain killer strong enough to stop the pain.
LittleHeart
08-02-2006, 09:50 PM
I have been reading my husband the post and he says he agrees with you Howdy.
Had to take him to ER last night for pain shot.He is having a better day though
thank goodness
kathmc
08-07-2006, 01:53 PM
Hi,
I haven't been able to check in on the forum for a while. Sorry this is not timely. I wonder why that Dr. thinks his pain is only in your husband's head. That sure relieves him of any responsiability to address a problem that is stressing, distressing and most likely solveable. Makes me want a MY DR. SUCKS site.
For the 5 years when I looking for a answer to the progessive weakness and falling, I was always adapting to keep doing the things I always did. Those adaptations resulted in uneven wear and tear on the left (rotator cuff included ) shoulder. The legs were weak and my arms gradually took over more and more for them. This was not clear for a few years. First it hurt for some motions. I reduced it's workload but it got worse. Finally froze solid. ( This means every muscle & tendon attachment in arm, shoulder and ribcage that doen't move as usual, starts locking in place. The longer the immobility, the harder it is to rehab..) Lots of pain no matter what. No position is comfortable. Easiest position was bent at elbow across chest or with hand near collar bone. Therapist said that was common, it protected the injury.
Two years of physical therapy and it is partly usable. 1/2 way through a P.T. person overcranked saying what progress we're making, ignoring my protest. No pain, no gain they said. That added the 2nd. year. Twenty years ago it only took 6 months to get my arm back. The joys of grtting older! Well, now the right shoulder is trying to join the left's retirement plan as it has been doing the work of two. More P.T. b4 it's totally locked up is my plan. A orthopedic Dr. gave me the prescription for physical therapy.
I had to race thru this. please excuse spelling, grammer, length. Have to go now. Good luck. If your fella doesn't fabricate stuff, I'd vote the Dr. off the island.
To better times and doctors,
Kathy
Suzanna
08-07-2006, 08:57 PM
When I was first told I had ALS 'they' said there would be no pain,,,,,ha!! After a year now I wake up all knotted, my muscles so tight and severe pain. The ALS clinic says now it is common in "this" stage to have pain and put me on morphine. Don't let others tell you how 'you' should feel!
Suzanna
July 11/67
DX Aug.05
LittleHeart
08-07-2006, 09:45 PM
I think reason he says its all in his head is because he doesnt specialize in ALS.
Seems like sometimes i know more about the disease than he does. But lately some things have been happening that im not sure is part of ALS.
Does anyone here have problems with passing out?He will be doing great then break out in a sweat from his kneck up and just go out.
These last anywhere from 10 minutes to few hours.When asked doc about it he says he has ALS. Thats only response i get.
Am hoping doc he is seeing later in week can shed some light on this.
Anyone who has simialar episodes who will respond would be very helpfuil
Thanks
LittleHeart: :)
Don't let that quack tell you that it is part of ALS. I've never heard anyone here or any other forum talk of that happening. Maybe it does but it's a pretty obscure thing to happen. Too many doctors don't have a real clue about ALS and just tend to Write you Off. You're gonna die anyway so why worry. It sucks and they need a kick in the butt. Thank God you're seeing another doctor. Don't take any crap from any of them. Tell them you want him checked for stroke, decreased blood flow in the carotid artery, TIA's and any other thing that can cause these episodes. I'd bet my pension it's not caused by ALS.
MaggyQ
08-08-2006, 09:05 AM
I think reason he says its all in his head is because he doesnt specialize in ALS.
Seems like sometimes i know more about the disease than he does. But lately some things have been happening that im not sure is part of ALS.
Does anyone here have problems with passing out?He will be doing great then break out in a sweat from his kneck up and just go out.
These last anywhere from 10 minutes to few hours.When asked doc about it he says he has ALS. Thats only response i get.
Am hoping doc he is seeing later in week can shed some light on this.
Anyone who has simialar episodes who will respond would be very helpfuil
Thanks
LittleHeart: :)
One of my clients was rendered a quadriplegic after an auto accident. While in rehab, they had him using an abdominal binder. This served to hold in the stomach/abdomen when they lifted him out of bed or shifted him from one position to another. There had been several occasions when his blood pressure dropped and his eyed rolled back, either passing out or almost doing so, in the course of making these moves.
Perhaps your loved one is experiencing the same kind of problem. Immobility is immobility.
joelc
08-08-2006, 01:53 PM
LittleHeart,
I have been having the same sweats you are talking about, but not passing out.
I was told the sweats up this high are because my adrenal glands are shot.
Anyone have any experience with this?
Joel
LittleHeart
08-16-2006, 12:15 PM
Hello sorry havent read the post lately been hectic here.
Al you were right the passing out isnt from ALS the docter isnt sure what it is yet but is doing every test imaganable but says he has never heard of a case where this is part of ALS so hopefully we will have answers soon.
braveheart
08-17-2006, 12:05 AM
Hi all, I've been struggling with my right side getting weaker, the disease is getting more real for me. My anti.dep. med. has been changed and I feel better now. I went to my Dr. in the M.S./A.L.S. clinic about pain I've been having usually after 4 a.m. I wake up with intense pain in either my knee, shin or ankle. Only intense massage or walking relieved it, so he gave me a script. for Gabapentin and it works for me. He didn't explain why but it must have to do with the death process of the muscles, I am also having swelling in my feet that are a part of it.
NEWS FLASH! I got my braces off last week, just shy of 5 years and 6 mos.post-op. I am so happy to be rid of them :-D. My 13 yr old son and I are flying down to Indy to see my family since mom isn't doing well and they don't know about my braces being off, I want to surprise them with a big white smile!
Later, Sarah
Have a great time Sarah. Congrats on the braces. AL.
