Pain and ALS

[Ellamay]

My husband has pain in his thigh muscles right now. He won't take anything for the pain and I have increased this amitriptaline to 75ml which the only medication that he will allow me to give him. I am hoping that it might help

 

[Al]

Hi Ellamay. Amitryptiline is an antidepressant used in ALS for helping dry up secretions. It probably won't help with the pain. Is the pain constant or does it come and go with cramping?

AL.

 

[Ellamay]

Al,
The thigh pain is bad at night when he has been sitting for a time and then he tries to stand and walk. He has a prescription for Baclophen but he won't take it. I think that he fears that if he takes it will make his legs weaker.

 

[Bini's buddy]

My husband who had ALS for 4 1/2 years and who recently passed away from this dreadful disease, complained of pain in his legs and back for the last year and a half of his life. Some of this he attributed to severe cramping in his legs, but mostly to the discomfort caused from sitting in his power chair for much of the day. We speculated that some of this was due to compression of the discs in his back. In my husband's words, he characterized it as "sitting on his bones" which was obviously due to the significant atrophy of his core muscles and those in his neck and back. In the last three months of life, he took a considerable amount of pain medication, including morphine. We too were told by medical professionals that there would be "no pain with ALS". Clearly more attention needs to be paid to this aspect of the disease. This is also borne out by the comments on this site.

 

[Al]

Hi Ellamay. Try to convince him to try the Baclofen, even 10 mg might help. Some people swear by drinking tonic water. It has quinine in it and some find it helps with cramps.

AL.

 

[Ellamay]

Al,

I will add Tonic water to his feeding tube routine. He doesn't have to worry about the taste.

 

[GlenBrittle]

Tonic water ?

Ooo ... is there a specific brand for this ? One better than the other?

Glen

 

[Ellamay]

Glen,
I have read on these boards that shwepps is the best brand to buy

 

[Felicia38]

My husband takes oxycotin 80mg 3 times a day and he still says the leg and hip pain is terrible. I have often wondered if he needs a different pain med. to help him.

 

[BethU]

Felicia ... I can't give you any real insight on which specific pain meds do what, but there is a difference among them as to what kind of pain they relieve.

My husband has had chronic back pain for 20 years, and the doctors (when they bothered to listen ... some great ones did) generally just kept upping the dosages. We recently acquired an insurance case worker (she had been an oncology nurse), and she reviewed his med list and said, "Why is there nothing here for nerve pain?" ... since nerve pain is what he has. Also, his pain meds had terrible side effects from nausea, etc., and he has struggled against continual weight loss. She made a list of suggestions for his pain clinic, and of the several possibilites he tried, he found out what works. He now takes one general pain pill and one for nerve pain. And the nausea is pretty much gone.

On the pain scale, he has gone from an 8 or 9 (out of 10 maximum pain) to a 3 or 4.

SO ... yes, pain meds do affect different types/causes of pain, and sometimes it takes a while to get the right combination or dosage to achieve optimum effect. If your husband's current medication isn't doing the job, talk to the doctor. There are meds out there that probably will help, and your doctor should be compassionate and professional enough to help you figure out what is best for your husband.

Good luck.

 

[Felicia38]

Bethu, The doctor gave him Lyrica to go with the oxy and my husband's pain is getting better. He is still very sick with all of the other symptoms but his leg pain is better than it was. Thanks for the advice.

 

[rowland's wife]

pain

my husband has pain mostly at night in his shoulders, it wakes him up at night. I have mentioned this to his neurologists 3 times now all she ever says is huh, why don't they try to treat it. One dr did say pain was not a sympton of als, but its funny to me that the shoulder pain was what my husband originally went to the dr for and it eventually led to the als diagnoses, but he still has the shoulder pain and has not been givin anything to try and stop the pain since he got the als diagnoses, and was denied long term disability benefits through his employer because they said it was prexisting because even though it was not diagnosed als when he went to the dr the shoulder pain and stabbing burrning pain he had in his shoulders was symptons of als, maybe I should have his neuro write aletter stating that pain is not a sympton since she doesn't seem to think it is. they thought my husband had fibromyalga until his speech started to slurr if it had not been for that I don't think he would have got the right diagnoses for a long time
ALS diagnoses sept.2008

 

[brooksea]

rowland's wife.

Your husband could have more than just ALS going on. Has he seen an orthopedic surgeon or rheumatologist? I mean it could be anything such as a torn rotator cuff or pinched nerve. He should be getting relief for his pain. If his doc won't give him anything, I'd switch docs. He has enough to worry about with just ALS.

 

[hopingforcure]

Wow, that just sound's wrong that he got denied for disability for pre-exsisting condition. Like CJ said the shoulder could be unrelated. And ALS is so hard to diagnosed. some take really really long.. I would really look into the entire picture. The shoulder, the disability.. Sorry you are going through all of this stress on top of als..

 

[mrsgijoe]

Hi Sophia-
I have a Lower Motor Neuron Disease which is a cousin to ALS and have the same arthritis LIKE symptoms in which my dr says are not related to my illness. Funny how he can't tell me why I started to get this the same time I was diagnosed with my disease. So I have found the cold has much to do with it. If it is freezing outside even if it is warm inside my legs especially my knees will turn red and burn so hot I feel like I will start a fire. My period makes it worse.. severe throbbing arthritis like pain from my feet and hands to especially my pelvis and lower back at this time. Weirdly enough I think air pressure has something to do with it as well. I was driving back from the Mayo Clinic in Arizona and started to cry uncontrollably that I was in so much pain.. rocking back and forth rubbing my legs feverishly.. asking him to do something I was in so much pain.. 15 minutes later I sat up and said I had no pain at all and I was fine. Aspirin helps ease the pain but doesn't take it all away.. I keep a lap heating pad plugged in near the couch and use that during the day and this may be a suggestion for your mum. Also if I have been out in the cold for awhile or out at night especially my legs will burn. I have also felt the pain with the covers being on them. It's hard because I get cold then don't want the covers on my knees because for some reason the heat coming off my knees and bouncing off the sheets create more pain and burning feeling.. you may ask your mum if this is the case with her. I think the only thing to help is to monitor the cold air she is in and also I have found that my twitching in my body gets worse when I eat chocolate or things with caffeine.. I am not giving up my chocolate on that one.. Take care- Katrina