Horable pain

[mohdfxr]

Does any one have bad pain with ALS? Might be from my back and bad disc's? Any way I can't find any doctors around Boise that will give out pain Meds . They all say something about the DEA bothering them. Needing help with my pain and all the emotions that flood the brain. Very strange trip so far.

 

[KimT]

Back in February I developed horrible back pain. It radiated throughout my back and into my sides. I still think it was triggered by a deep tissue massage series (that actually helped the sciatica I was experiencing.) The pain was so bad I spent most of the day on a heating pad and couldn't do much of anything except watch TV and wander around the apartment. I went to my local neurologist and he ordered an MRI of my back and x-rays of my ribs. Normal. He gave me an Rx for Oxycodone and it helped immediately. I only took a very small amount twice a day. After about a month I dropped it down to once a day because the pain had lessened. I've been off it for about a month now and only use Tylenol and Advil (one of each per day.) I would NOT hesitate to go back on the Oxy if I had bad pain again. I am aware of the risks (especially respiratory) and accept those risks.

Gentle massage is the only type I can tolerate which is entirely different that what I was used to and requested. Sometimes, even a vigorous foot rub will hurt the bottoms of my feet.

The other thing that helped me a great deal is floating in the Gulf of Mexico. I forgot to take my Advil when I was at the coast. It actually helped with every symptom I have. The pool helps somewhat but not the way the Gulf did. I'm hoping to get over there in September while the water is still warm.

 

[lgelb]

If you have disk herniation(s), pain can often be helped by some combination of aquatherapy as Kim mentions , massage, PT and/or injections (by someone very skilled) with surgery as the last resort. Make sure anyone who touches you has experience with neuromuscular disease and knows not to do any deep work.

The emotions do flood the brain -- but reducing your pain may help you deal more clearly.

 

[mohdfxr]

Thank you all for the great info. I can't get a doctor to give me anything for pain.

 

[avnl]

Taking one of each per day of Tylenol or Advil is not using full dosing of these medications. I would try two Tylenol every 6 hrs to 8 hrs or 2 Advil every 6 to 8 hrs. Only if one of these medicines is not helping would you use both on a staggered schedule so you could take something every 2 hrs. Tylenol and Advil work differently which is why you can take both in the same day. Also try getting ahead of the pain not chasing it. Igelb's recommendations and better dosing and using heat or cold may eliminate the need for narcotic meds. I am hoping that the reluctance for the narcotics is only because of the respiratory issues not because of fear of addiction. A pain clinic wth hopefully some experience with motor neuron disease might be an avenue to pursue
Good luck
Anna

 

[KimT]

The original poster didn't mention anything about taking Tylenol or Advil. I did. I have experimented with both Tylenol and all the NSAI meds, including aspirin. When I had the horrible pain, nothing BUT Oxy helped. If I had access to medical marijuana, I would have tried that.

My pain, at that point, was acute, not chronic. Oxy made it so I could go out again, get to church, play cards, and enjoy my life. No amount of Tylenol and Advil did the trick, unfortunately.

I also had approval from my neuro at Clinic. I knew the risks. I understood the mechanism of how the drugs worked and I made an informed decision that worked for me. It might not be the decision some or even most would choose, but it is the one I chose. My dose of Oxy was only 1/4 of a 15 mg. tablet twice a day. It was enough.

 

[affected]

The thing with these narcotics is that regular dosing of tiny amounts can do an incredible job. The tiny amounts do not depress the breathing and don't lead to a dependency as you are using them for a reason in small amounts.