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.

@rwinney

Oh, Ripley, I'm so sorry you're having a hard time accepting what may be your new normal. Change is hard and acceptance of something your not happy about makes it all the harder. I stubbornly resisted significant changes in my life, too, especially when it meant no longer being capable of working. Loss in any shape or form is something we naturally mourn. It's important to give ourself grace during the process. Journaling and the practice of mindfulness helped me quite a bit, along with cognitive behavioral therapy. Have you considered therapy to work through your challenges?

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No, haven't considered therapy. Right now I'm trying to figure out how to deal with the pain when it gets bad. I have an acupuncture appt tomorrow with someone who also deals with pain management.

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Yes every day. When I was diagnosed with fibro, the doctor's mother had fibro and found this, the weakest pain reliever by rx , worked well. He would give me a bunch of samples every visit. Back then I ony took one per day in the morning bc it would otherwise interfere with sleep. Now I take two in the morning and sometimes one in the early afternoon. I moved to Colorado 12 years ago and the new doctor was fine keeping me on it as well as the one who took over for him. Now I have yet another doctor since he retired and the new one is questioning my refill. I think I've been able to stay on it because I never take more than prescribed and I can't take the ssri's. Tramadol works a bit like them but I don't get the dangerous side effects. Cross fingers there won't be a problem.

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@ripley

No, haven't considered therapy. Right now I'm trying to figure out how to deal with the pain when it gets bad. I have an acupuncture appt tomorrow with someone who also deals with pain management.

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I have heard good things about accupuncture for fibro pain. Please let us know how that goes as well as how often it's recommended.

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I have also been diagnosed with fibromyalgia (since 2009). I have tried chiropractic, acupuncture, massage, Lyrica, Gabapentin, physical therapy, chiropractic neurologist (gut health, food sensitivity testing, vibration plate, eye lights, supplements, etc), Savella, lidocaine, and I can’t remember what else. The only thing that worked for me was Effexor Xr. This is similar to Cymbalta but it’s used off label. There can be withdrawal symptoms if stopped suddenly but it was something I was willing to accept for the trade off of 90% or more pain relief from fibromyalgia. I hope you find what works best for you

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@sisyphus

My mantra just about ANY health problem/disease is: Are you, old sport, living OVERALL a reasonably healthy lifestyle? The question helps me bcz I can start Immediately with something if my food, posture, stress/thoughts, and physical activity/flexibility are deficient.
My first pain problem was some 30 years ago: right foot and left knee. Thank goodness taking care of myself in areas that were within MY control I had been able to continue working in my profession that often required much hazardous/difficult walks. Thirty years later, I still am (fingers crossed) walk up to 12 floors in my apt bldg -- I often do it, last one was yesterday. But NOT to avoid pain as much as to see how far my body still can cheerfully take up on self-challenges. But I do have 'pains' as all lives do.

In fact a look at NIH and Mayo both recommend physical activity/therapy,
https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780

Exercise, relaxation and stress-reduction measures also may help.

Good luck

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Reading your words - "taking care of areas that were in MY control", really resonates and I'm glad you mentioned it. The power of mindset, shifting focus and replacing negative thoughts with positive thoughts helps along with the valuable things you also point out like exercise, relaxation, and stress-management. When all else fails and begins losing effectiveness such as meds, injections and procedures, it's kind of like - Okay, now what?

Have you always been a motivated person? Taking yourself up on self-challenges is a valuable tool. Goals are important. As you bring up exercise, relaxation and stress-reduction, it reminds me that the physical component goes hand in hand with the emotional, behavioral and chemical components. As Dr. Sletten from Mayo's Pain Rehab Center says - "you have to be in on ALL 4 components". These approaches can start small and increase gently to build upon step by step, day by day.

Thirty years later, as you walk up 12 floors to your apt building, you can thank perseverance and lifestyle for making it happen. That's awesome! May you continue to climb the stairs, with moderation of course, and test boundaries, but know that reaching plateaus are okay, too. How have you learned what physical activities have been best for your pain? Do you work with a physical therapist or pain rehabilitation program?

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@eveninggazer

I have also been diagnosed with fibromyalgia (since 2009). I have tried chiropractic, acupuncture, massage, Lyrica, Gabapentin, physical therapy, chiropractic neurologist (gut health, food sensitivity testing, vibration plate, eye lights, supplements, etc), Savella, lidocaine, and I can’t remember what else. The only thing that worked for me was Effexor Xr. This is similar to Cymbalta but it’s used off label. There can be withdrawal symptoms if stopped suddenly but it was something I was willing to accept for the trade off of 90% or more pain relief from fibromyalgia. I hope you find what works best for you

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What does the Xr stand for please? TU

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@irr4et

What does the Xr stand for please? TU

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I think it's part of the drug name. Google: Effexor XR

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@irr4et

What does the Xr stand for please? TU

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Hi,
Xr is extended-release

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@rwinney

Reading your words - "taking care of areas that were in MY control", really resonates and I'm glad you mentioned it. The power of mindset, shifting focus and replacing negative thoughts with positive thoughts helps along with the valuable things you also point out like exercise, relaxation, and stress-management. When all else fails and begins losing effectiveness such as meds, injections and procedures, it's kind of like - Okay, now what?

Have you always been a motivated person? Taking yourself up on self-challenges is a valuable tool. Goals are important. As you bring up exercise, relaxation and stress-reduction, it reminds me that the physical component goes hand in hand with the emotional, behavioral and chemical components. As Dr. Sletten from Mayo's Pain Rehab Center says - "you have to be in on ALL 4 components". These approaches can start small and increase gently to build upon step by step, day by day.

Thirty years later, as you walk up 12 floors to your apt building, you can thank perseverance and lifestyle for making it happen. That's awesome! May you continue to climb the stairs, with moderation of course, and test boundaries, but know that reaching plateaus are okay, too. How have you learned what physical activities have been best for your pain? Do you work with a physical therapist or pain rehabilitation program?

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Frankly, I don't think I ever been a fan of what is called 'motivation' because I ask: So where or how do I find it?

And yet I strongly believe that nature has done a darn good job of packing us with parts that we ALL need to live a fulfilling (enjoyable) life -- even if we die young, or end up in a serious accident, and (and this may be hard) been in an abusive relationship. Did Sisyphus have an 'unfair' share of his misfortune, condemned to roll up a heavy rock only to walk down and do it again?
The French Algerian author of the book says he was "free" on his way down,to 'live' his life His Way.

Harsh?
But life as we know does come in more flavors than we can imagine. And I'll be first to admit I don't know how I'll handle it; I've not given every possible terrible situation a test. Life can happen unawares. But fables like that tell us a deeper universal truth: Humans are capable of living in most trying situations. Vikto Frankl was one, a four time survivor of holocaust camps.

My impetus (not motivation) to live generally sensible life springs from my universal qualities of play (that's why I was doing air soccer kicks in place of steps) curiosity (I am mostly occupied figuring out non-med solution to drug overdose crisis as its carnage is more than than car accidents and gun shots combined. Think about it we are killing ourselves in Increasing numbers because we take in to give us escape from our Existential pain ends up snuffing our lives)

Which brings me to next human (free) need: friends
Psychiatrist Singer in Cato Institute and our Surgeon General thinks this is what's killing us. Too bad this is ONE thing that's not in my control. Yet need so strong I and you cannot not contnue pursuing ways out. So I am I (a rationalist) am going to Baptist church dinner Saturday party to meet my friends.

So Rachel, this is how a deeper purpose spurs me to a healthier life as healthier I could be closer to my purpose. Note that it's Not personal. Patrick Hill of Washington Stae University at St louis has written a lot about it.

May you find an Enjoyable life with health.

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I go to a pain clinic for 5-oxy-3.25 tylenol (Percoset). I take it at night. I do not know what this is, but it has plagued me for the past 8 years. I have autoimmune with fibro overlap. It is definitely affected by diet (stick to non-processed, low sugar, avoid inflammatory foods) and improved by movement during the day to strengthen and loosen tight tendons and muscles. I found that edema massage (toes to torso/fingers to shoulders) as on you tube, laying next to the wall with legs up against it for 20 minutes, basic cat/cow/child/cobra yoga, elevating legs and doing pumping (heel to toe) motions makes a difference. My D3 levels were low and so I take that and B vitamins. So: make sure you do move periodically throughout the day and stay hydrated; this is not something that you can improve with rest in bed.

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