How is everyone managing their pain? - My MSAA Community

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How is everyone managing their pain?

ynggal
ynggal

At my last visit to my neurologist I expressed my concern to him that I'm taking 800mg of ibuprofen every single day at least once a day and he said he thought I'd be fine. Well, after an endoscopy and colonoscopy I'm being treated for an ulcer so obviously it wasn't "fine".

The gastroenterologist prescribed Tramadol for me to try and it made me very sick and itchy all over not to mention it did absolutely nothing for the pain. Incidentally, he told me it was non-narcotic. Not true. 🤦‍♂️

I have a prescription compounded cream I use for localized pain like when my legs ache and it's great, but for the widespread pain I experience every day what should I do? I'm at my wit's end. I have an appointment with the neurologist next month. Any specific questions I should ask him?

18 Replies

Baclifen and gabapentin seen to be two meds that many people here are on. Do any of them work for you?

ynggal
ynggal in reply to Iona60

Thanks, Iona60. I'll be sure to mention those to him. I appreciate your feedback!

Iona60
Iona60 in reply to ynggal

Baclofen. Sorry, I spelled that wrong.

I'd be sure to bring this up to the neurologist, but if you get no response, I think I'd consider another neurologist. There are too many options for pain treatment for you to suffer unless you've tried them all without success. I sure hope you get relief quickly.

ynggal
ynggal in reply to greaterexp

It's at the top of my list of things to discuss! Thanks for your feedback, greaterexp.

I vote for a new Neurologist. I take several meds for pain Gabapentin and Baclofen are two that I use. Nothing takes away all my pain but they sure come close. Best wishes, there is something out there that should help. :)

Thank you, MS_Indestructible. I take Tizanidine as needed for muscle spasms or when my pain is really bad because it knocks me out and I can just sleep through it.

ibuprofen is not a safe substance. It cause liver damage with long term use. Gabapentin and Baclofen are not safe either. I don't know how many times my neuro prescribed it. I refuse to take either! Try some DMSO for immediate pain relief. Tramadol works for me. It's the only thing that allows me to take a few steps so I can function on my own to go to the bathroom when my husband is at work. I have severe foot drop of my right foot and it allows me to shuffle a few feet using the grab bars in front of my toilet . But the version of tramadol the pharmacies have drug me up too much and I don't like that as I don't like the feeling of being drugged up. So I buy the veterinary version of tramadol as it works much better for me. 50mg twelve hours apart is all I need to function daily. If you can call that functioning, not being able to walk at all.

I use Motrin carefully because of ulcer history. The others have mentioned the most commonly used treatments for MS pain, and your neurologist should know about your ulcer (and the date it was diagnosed) and reaction to ultram. The type of pain treatment often depends on the type of pain and sometimes requires a consult with a pain specialist. Most people start with ibuprofen though, so you're on the right track.

ynggal
ynggal in reply to kdali

kdali, I was prescribed Effexor XR by a pain specialist for fibromyalgia (before my MS diagnosis). When I lost my insurance and couldn't afford to pay for it out of pocket I had to suffer the horrible effects of withdrawal. I swore I'd never take it again. Honestly, I don't see where it did much of anything to help the pain anyway.

kdali
kdali in reply to ynggal

That's scary and dangerous! I don't know if MS pain and fibro pain are approached the same way.

Baclofen and small amts of Tizantidine keep me relatively comfortable. I don’t like the effect on my mentation. It’s a trade off. But with some Lyrica added in its working for now. There are answers. you need to see what works for you. Just don’t give up!!!

Has anyone found this pain (neuropathy and spasticity/tightness) to fluctuate with hormonal changes? It used to get worse around the time of my period. I’m now going into menopause and the pain increased pretty significantly about three months ago.

kdali
kdali in reply to Ethyrum

It makes sense, but I have not paid attention. Mine certainly increases if I have not slept well.

Ethyrum
Ethyrum in reply to kdali

Sleep definitely has a significant impact on my neuropathy.

kdali
kdali in reply to Ethyrum

Have you had a hard time sleeping the past few weeks? I've heard the change can make sleep rough. I wonder if there are menopause and MS or neuropathy forums you could search and see what you're up against. Your doctor might know also!

Ethyrum
Ethyrum in reply to kdali

Thank you. Good ideas. My sleep fluctuates (sometimes it’s fine and sometimes it’s a problem). Recently the neuropathy woke me up...ugh.

Something else to think of is that long term use of NDAID can cause liver disease and permanent damage. The reason I know this is I took 75 mg of Voltaren every night without fail fro many years. The time to find out you only have one kidney is not when you find out it’s fiseaesd. Prolly isn’t great for the liver either but I haven’t checked that.

My Nephrologist told me to never take another NSAID in my life. I haven’t since then.

Dave

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