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[Magnolia209]

I have an MD appointment in a few days and was wondering what medications may be helping others for pain or fatigue. I’m a 65 yr. old carrier that’s barely getting around now in the house with a rollator and use a w/c outside. I’m also experiencing nausea for the last 4 months which is really making life more miserable. The MD put me on 100 mg. of Lyrica about 6 weeks ago. I didn’t see any change in pain so I stopped and he now increased it to 200 mgs. which I never started. Anyone have any relief with Lyrica? I’ve tried high doses of Gabapentin but after awhile that stopped working so I’m off of that too. I saw a neurologist over a year ago and he did a lot of tests and a brain MRI. He told me the MRI showed some usual things related to AMN. Are there any carriers out there that have been told this? The neuro never mentioned coming back and now with all the CV19 quarantines over the last few months, I never got back. Thanks and look forward to your comments.

[mariagno]

Modifinil (provigil) works for me on fatigue. 200 mg a day and I take it as needed and not first thing in the morning so I can see how the day is looking. You can’t take it too late or you can’t sleep. I would start with 100 mg and never the extended release.

A lot of medications Can cause drowsiness so make sure your doses are not too much and the medication is useful.

I dropped Baclofen and Gabapentin. I take 4-AP and provigil. The pain is either due to the tightness of the muscles and the impact on joints or the tingling burning sensation.

Stretching and staying loose helps the first and exercise helps the latter.

Keep moving and keep exercising.

Check your diet, too. I find too much salt or too much sugar makes the tingling and burning worse.

I rely on the occasional aspirin or ibuprofen for the bad days.

I had different doctors prescribing stuff that made things worse. It is easy to be over prescribed because doctors like to throw pills to fix things. I found when I cleared the medication cabinet out, watched my diet, exercised regularly, and slowly added things one at a time to be sure things were useful that things improved greatly.

I am 58 and was diagnosed in 1995. I feel better, lost 35 pounds, and have a much more positive outlook the last 3 years than the previous 22 years.

Best of luck!

[Magnolia209 in reply to mariagno]

Thanks mariagno! Darn, there goes the ice cream...my only happy place lately! Yes, it’s very hard to stay positive. I’ll request the Modifinil and 4AP too. I know I should keep moving and exercising but it’s tough with the pain and fatigue, but I’ll give it a real go. Appreciate your comments...

[mariagno in reply to Magnolia209]

I had a big bowl of ice cream every night since I was 12 years old. Cut it down to scoop a night. It has now been replaced with a bowl of cereal or some greek yogurt.

I found it to be the taste of something sweet, not the ice cream I was "addicted" to.

It is hard when you are tired to exercise. Don't make it about a workout. It doesn't have to be. I stretch while playing with the dog on the floor watching TV or in bed when I wake up. It does not take much. Exercise could just be a 5-minute walk around the house or yard when the burning gets to be too much.

Then work your way up to a few times a day doing this.

No need to sweat or committing hours to exercise. Just something.

You may just find after a few weeks, you are really exercising. Small and safe steps is a great start.

God bless.

[Magnolia209 in reply to mariagno]

Thanks so much. I will definitely give it a try. I’ll let you know.

[Magnolia209 in reply to mariagno]

Well, my doctor did everything he could to get me on Modafinil but it’s been denied payment. I’m on Medicare and Modafinil is not FDA approved for X-linked ALD. Very frustrating!

[Equinney in reply to Magnolia209]

My neurologist was able to get insurance to pay for the Modafinil. My PCP couldn’t get it approved. Don’t know what she did. Possibly see if your doctor might put you down as narcoleptic if possible. I hate being deceitful, but insurance companies don’t know what works for AMN. I notice a difference using it. But only with the brain fog. Which is great, because that gets frustrating. I only take it on days that something is going on to use my mind more. Sunday’s and doctors appointments are the main ones. Best of luck!

[Magnolia209 in reply to Equinney]

Thanks Equinney

[mariagno in reply to Magnolia209]

See if Good RX can help

goodrx.com/provigil

[Magnolia209 in reply to mariagno]

My doctor finally got the Modafinil approved for me and after using a GoodRx coupon, it cost me $19.50!

[Equinney in reply to Magnolia209]

Without insurance is over $1000. Great that you got it!!! Hope it helps.

[Magnolia209 in reply to Equinney]

Equinney , what a difference the Modafinil is making for me! No more laying around napping all day. I’ve actually started doing some things I enjoy again!

[Equinney in reply to Magnolia209]

So glad it’s helping you!!!

[Magnolia209 in reply to Equinney]

Thanks so much. Now if only something for pain 😏

[B2-555 in reply to Equinney]

There is a generic form now

[Magnolia209]

I’ve seen on some posts that Modafinil is taken for 10-12 days and then skipped for 2-3 days. Can anyone tell me why this is?