If you haven’t gotten a reply, get another doctor. That is too long to wait

Lyrica worked wonders for me – at bedtime. Gained tons of weight right away, but didn’t care because of how good it felt.

BUT — legs swelled, liver enzymes increased. Enough to convince me to stop.

I haven’t found anything I can tolerate for pain w/o groggy/draggy side-effects, including some topical (compounded Rx) analgesics.

Nurse Pract. recently recommended BENADRYL + MELATONIN ‘cocktail’ at bedtime. Worked great for sleep, BUT, also caused the groggy / draggy ‘hangover.’

I use CELEBREX when pain is acute — and it’s great — usually only about 1 pill, 2-3 times/week.

Recently, tried wrapping ELECTRIC BLANKET around my legs a.m. and p.m. 1-2 hours at a time — decreases tightness/pain in my legs alot — also helps w/ muscle spasms all over — also helps digestion work better — FEELS WONDERFUL!!!

Sick for years — I purposely have avoided visiting a rheumatologist as the meds they prescribe I consider nasty and dangerous.

DITROPAN XL for colon, bladder, ureter spasms.

Anti-depressant for survival.

NUVIGIL- because of ‘probable’ narcolepsy.

@bearylynn

Lyrica worked wonders for me – at bedtime. Gained tons of weight right away, but didn’t care because of how good it felt.

BUT — legs swelled, liver enzymes increased. Enough to convince me to stop.

I haven’t found anything I can tolerate for pain w/o groggy/draggy side-effects, including some topical (compounded Rx) analgesics.

Nurse Pract. recently recommended BENADRYL + MELATONIN ‘cocktail’ at bedtime. Worked great for sleep, BUT, also caused the groggy / draggy ‘hangover.’

I use CELEBREX when pain is acute — and it’s great — usually only about 1 pill, 2-3 times/week.

Recently, tried wrapping ELECTRIC BLANKET around my legs a.m. and p.m. 1-2 hours at a time — decreases tightness/pain in my legs alot — also helps w/ muscle spasms all over — also helps digestion work better — FEELS WONDERFUL!!!

Sick for years — I purposely have avoided visiting a rheumatologist as the meds they prescribe I consider nasty and dangerous.

DITROPAN XL for colon, bladder, ureter spasms.

Anti-depressant for survival.

NUVIGIL- because of ‘probable’ narcolepsy.

Jump to this post

I know what you mean by side effects. I am seeing my specialist next month in May. I am very limited on what I can take due to allergies. I am using aspercream now and pain meds. Awful!!! Thanks for the reply!

@useless

If you haven’t gotten a reply, get another doctor. That is too long to wait

Jump to this post

I did get a reply but my specialist is waiting till my c-diff is under control and I am off on Vanco! Sorry it took me so long to reply!

I also had bad side effects from Neurontin, I just started Lyrica. So far so good… I also find trigger point massage therapy helpful.

@jeffinmn

I also had bad side effects from Neurontin, I just started Lyrica. So far so good… I also find trigger point massage therapy helpful.

Jump to this post

My rheumatoligist took me off of neurontin, I couldn’t stand the side effects! He referred me to a specialist who does holistic therapy. No sure if this will work or not. Have you ever tried accupunchure?

I know it is hard, I just found out in April that I am going to live… Thought I was a goner for the last year. When you are sick, your friends will abandon you, no one will hire you and you will need to rely on yourself more and more, even if you don’t think you can… My wife responded to the news with anger, at me! My kids pick up on her cues and act the same… My friends vanished into thin air… So, if any of this sounds familiar, it is because it is repeated all the time in circles dealing with serious illness. I find that support groups are useful and having a rare disease myself, recommend you find one like I did on Facebook… Preferably a closed group, to keep out the trolls… Hang tough… You sound like a strong person, so I am confident you’ll get through this… Peace. Jeff

@jeffinmn

I know it is hard, I just found out in April that I am going to live… Thought I was a goner for the last year. When you are sick, your friends will abandon you, no one will hire you and you will need to rely on yourself more and more, even if you don’t think you can… My wife responded to the news with anger, at me! My kids pick up on her cues and act the same… My friends vanished into thin air… So, if any of this sounds familiar, it is because it is repeated all the time in circles dealing with serious illness. I find that support groups are useful and having a rare disease myself, recommend you find one like I did on Facebook… Preferably a closed group, to keep out the trolls… Hang tough… You sound like a strong person, so I am confident you’ll get through this… Peace. Jeff

Jump to this post

Thank you for the comments! It has been a rough three years, dealing not only the fibromyalgia but c-diff disease and post IBS. I just want to be myself again!

Thank you all for chating w/ me and my options. My rheumatologist thinks I should try acupuncture? Any ideas? I have looked into some possibilities, but cannot afford it, and my health insurance will not pay for it. Any sugesstions? I have been dealing w/ alot lately w/ my prior illnesses and I lost my job and my dream home due to all of this. Have no income. Waiting on reply for short term disability for my other condition.
Trouse