Chronic illness/Pain support group

I was wondering if there are others out there who have chronic illnesses or pain, and wanted to start a group for us folks.

I am tapering slowly off K. It has been challenging due to uptick in physical symptoms and pain from my genetic disease, Ehlers Danlos. K was prescribed to help with the muscle spasms associated with hEDS. I became tolerant after 6 years on it.

I hope this finds others having smoother tapers. Wishing healthier 2021’s to all.

Best,

Sun 🌻

Hi Sunflower,

Sorry for your pain.

I think I fit in here, having much pain because of Fibromyalgia and Polyneuropathy.

Plus tapering causes quite a bit of pain as well.

This month is the start of my 3rd year of tapering off Diazepam. I've had really awful months. At the moment it's all going more gently. But low and slow does it. No chance of going a bit faster.

Hope you're feeling better soon.

Trochsetter

Hi, Trochsetter.

Thanks for your reply. I am sorry you have Fibro and Neuropathy, as well as increasing pain with your taper. Did you have these before benzo? Is there anything you find helpful for your pain?

From your signature, it looks like you are getting lower in your taper, congratulations on how far you have come. It can’t be easy, but I hope the worst is behind you.

Sun 🌻

Hi Sun,

My Fibromyalgia started in 2017, a few months after I had surgery. That's what started all this sh*t.  I was put on Diazepam to relax my tight muscles in my upper legs.  The Polyneuropathy started after being on Diazepam for about 10 months.

It's been really difficult to taper off. At the moment it's unclear to me, what 's causing me the most pain, Fibromyalgia or tapering,  or perhaps both. Nothing seems to help to reduce the pain. Tylenol takes away the sharpest pain. But never for long. I'm thinking of "holding"  for a while again and see if things might settle down a bit.

All the best to you.

TS

Hi, Trochsetter.

I am apologize for the delay in replying. I have not been able to sign on this past week due to migraines.

I am also sorry you are suffering too. Damn, it makes it so challenging when there is an underlying pain condition to know what is what! What type of surgery did you have? Are you able to function normalish with your taper?

Hello Sun,

Sorry you had those migraines. I hope you're doing better now.

I had to undergo surgery because of a groin rupture. A few months later I started having these muscle pains and stiffness in my upper legs. I still do. As well as losing much muscle strentgh.

The joint paint in knees and hips is most likely caused by tapering off Diazepam,  plus is a possible side effect of Paxil.

I am able to function "normalish" as you so nicely describe it.

There's only one way to go and that to go on!

Stay strong!

TS

Hi, Trochsetter.

 

I am apologize for the delay in replying. I have not been able to sign on this past week due to migraines.

 

I am also sorry you are suffering too. Damn, it makes it so challenging when there is an underlying pain condition to know what is what! What type of surgery did you have? Are you able to function normalish with your taper?

Sunflower, I have had migraines a good part of my life.  Used sumatriptan for years, but now I am using one of the new migraine meds, Ubrelvy.  It is so much better than the old migraine meds, I also tried Nutrec, liked it too.  There really is no comparison.  If you have insurance, your Dr can give you a card that will give you a huge discount, unfortunately if you are on Medicare, it's super expensive.

It's new and they charge like it's gold.  The help it gives is amazing.  It's like they just disappear.

The only time it didn't work that way, I had 2 auras in same day.  That had never happened before and hope it doesn't happen again.  Anyway, just a thought, Mary 🙋🏼😘🙏😷