Fibromyalgia -- Need help on how to handle severe pain

Posted by ripley @ripley, Jun 14, 2023

I was told by a Rheumatologist last year that I have Fibromyalgia. She referred me to my GP for treatment, but he doesn't know anything about this disease. I need advice on how to handle the pain which is sometimes so severe and lasts all day. It usually eases some by bedtime, but lately I've been waking up about 3:00 AM with bad legs pains that keep me from falling back asleep. Since this started 18 months ago, the pain has gone into remission for a few months and flares up again for a couple months. The insomnia and other issues remain. My latest flare started about 5 weeks ago. The only meds I'm taking are Tylenol, which doesn't help, and sometimes Cyclobenzaprine at night. I am afraid of Cymbalta after hearing horror stories about terrible withdrawal issues when wanting to discontinue it due to it's side effects or when it stops working. It seems like all the drugs used for this disease have withdrawal problems. Any help would be appreciated.

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

I’m an 89year old KWV with 24/7 pain and adding insult to injury I have very bad RLS (Restless Leg Syndrome).
I take a number of medications which do help somewhat, but I feel in excess of what is healthy. For years now I have pursued OxyContin to no avail. From my experience after major surgery OxyContin just one tablet at bedtime allowed me to sleep the night through with no side effects in the morning.
Now, all I hear is it’s additive, so it is, but at 89 give me a break.
All well who ever said life was going to be easy.

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@ripley

How much Tizanidine do you take and do you take it throughout the day or only at night? Did it minimize your pain better than Flexeril? I have a microwave heat pack that I use. I will have to find a new rheumatologist or pain clinic. Thank you.

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Hi Ripley, I can take 1/2-1 4 mg. of a Tizanidine at bedtime. I am ultra sensitive to medicine and I find a 1/2 is all I need. It helps me to sleep better. It works quicker than Flexeril for me. I do not have to take it every night. The Plaquenil for lupus has been a tremendous blessing to me as well for pain. I only take 100 mg....1/2 of a 200 mg tablet as the 200 mg is too much and causes severe stomach cramping and diarrhea. I take the Plaquenil in the morning with food. I hope one of these works for you. Bless you as I know what Fibro pain is like.
Please keep me posted. Praying....

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@heisenberg34

I had typed out a rather lengthy response to you, but, right in the middle of it...boom! it all disappeared! I will retype when I have more time.

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Yes! I have found that when I type out a response, if I need to scroll for a name or to verify a quote, I lose all I typed. I try to remember to copy before leaving the comment text box.

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@ripley

Before this latest bout with pain, going on 6 weeks now, I was pain free for six months except for some headaches part of the day. I guess I was hoping that was the end of it. I will have to find a pain clinic or new doctor, most of them have long wait times for appointments. Have you tried any prescription medications and, if so, what was your experience with them? What kind of doctor prescribed your pain pump, is it surgically implanted, and what medication is dispensed from it? Thank you.

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OK, let's try this again. The pain pump was surgically implanted in my abdominal wall after a successful trial. I had been on Gabapentin, Diazepam, and Tramadol since 2017. Those meds, along with a spinal cord stimulator (implanted in 2018) got me back to about 85% of normal. Then in Feb of 2021, all the pain returned like a sledge hammer. No one can explain it. Innumerable pain specialists were baffled. That left me with the option of the pain pump. Was put in on April 15 of this year. I believe it dispenses hydromorphone or some such morphine derivative. No pain relief at first. Took several readjustments of pump's output before I felt any relief. Even then it was minor. Another few adjustments began to offer real pain mitigation. After getting the remote set up a couple of weeks ago and getting another readjustment or two, I am able to work for almost a full day without screaming pain. The remote allows me to deliver a "bolus" or extra medication, if I am having a bad day. Usually heps a lot. The pain pump was a result of my own digging until I found a pain specialist who was willing to do the trial. The successful trial led to having a neurosurgeon do the implant surgery. No big deal. I only took a couple of Tylenol for a few days to help with incision pain. I was able to wean myself completely off the Tramadol. Is the pain pump perfect? No. Would I have preferred a surgical method of correction to get pain relief? Yes. But, this is the best thing I could have done, apparently. I thank the Lord for guiding me through this process. Please feel free to reach out for any other questions.

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@covidstinks2023

Hi Ripley, I can take 1/2-1 4 mg. of a Tizanidine at bedtime. I am ultra sensitive to medicine and I find a 1/2 is all I need. It helps me to sleep better. It works quicker than Flexeril for me. I do not have to take it every night. The Plaquenil for lupus has been a tremendous blessing to me as well for pain. I only take 100 mg....1/2 of a 200 mg tablet as the 200 mg is too much and causes severe stomach cramping and diarrhea. I take the Plaquenil in the morning with food. I hope one of these works for you. Bless you as I know what Fibro pain is like.
Please keep me posted. Praying....

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When you were on Flexeril, what dose were you taking? Do you ever need the Tizanidine during the day for pain? Thank you.

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@rocknrobbn

My Rheumatologist also referred me back to my PCP and said to get a referral to a pain specialist. The pain specialist wasn't helpful.
My PCP prescribed gabapentin which helped but the side effects were horrible. I thought I had dimentia! So I stopped taking it. Then I tried nortriptyline and those side effects were terrible. It did work. I had to go off of it.
So right now I don't want to take any more meds, I already take several meds for chronic depression with PTSD. Those meds make it difficult to add such drugs as gabapentin and nortriptyline.
It took me 3 years to get a diagnosis.
My joint pain is much worse, muscle pain is awful and muscle weakness and sleep disturbance make for a changed life.
I celebrate the rare good days and don't fret anymore when I am relegated to the couch.
Whenever I do anything extraordinary like travel, hike on a rare good day, or walk 30 minutes 5 days in a row, I can expect a bad flare.
I apologize for the run on sentences. Too tired today to correct.
I meditate, stretch and move around for an hour and a half when I get up in the morning. Meditation helps.

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What kind of stretches do you do, just general all-over body stretches?
Mornings are my toughest as far as pain goes. Thank you.

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@heisenberg34

OK, let's try this again. The pain pump was surgically implanted in my abdominal wall after a successful trial. I had been on Gabapentin, Diazepam, and Tramadol since 2017. Those meds, along with a spinal cord stimulator (implanted in 2018) got me back to about 85% of normal. Then in Feb of 2021, all the pain returned like a sledge hammer. No one can explain it. Innumerable pain specialists were baffled. That left me with the option of the pain pump. Was put in on April 15 of this year. I believe it dispenses hydromorphone or some such morphine derivative. No pain relief at first. Took several readjustments of pump's output before I felt any relief. Even then it was minor. Another few adjustments began to offer real pain mitigation. After getting the remote set up a couple of weeks ago and getting another readjustment or two, I am able to work for almost a full day without screaming pain. The remote allows me to deliver a "bolus" or extra medication, if I am having a bad day. Usually heps a lot. The pain pump was a result of my own digging until I found a pain specialist who was willing to do the trial. The successful trial led to having a neurosurgeon do the implant surgery. No big deal. I only took a couple of Tylenol for a few days to help with incision pain. I was able to wean myself completely off the Tramadol. Is the pain pump perfect? No. Would I have preferred a surgical method of correction to get pain relief? Yes. But, this is the best thing I could have done, apparently. I thank the Lord for guiding me through this process. Please feel free to reach out for any other questions.

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Did you have any problems getting off the Gabapentin? Thank you.

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Still on the Gabapentin. Just waiting for the team to give me the word. The fewer drugs I have to take, the better!

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@vellen

Yes! I have found that when I type out a response, if I need to scroll for a name or to verify a quote, I lose all I typed. I try to remember to copy before leaving the comment text box.

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Yes, I try to remember to do that as well. Keyword being "remember".

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All medications prescribed for fibromyalgia have side effects and are not very effective. The Alternative Pain Treatment Directory website has a good article about alternative treatments, "The Six Best Natural Treatments for Fibromyalgia Pain Relief". Here's the link: https://www.paintreatmentdirectory.com/posts/the-six-best-natural-treatments-for-fibromyalgia-pain-relief

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