Feeling at my wits end with Chronic Pain and Fibromyalgia
Usually I am not one to share much of my personal story but here goes...I have what is called moderate to severe degenerative disc disease, arthritis of the spine C3-C7 and lumbar spine, and Fibromyalgia. In the 20 years Ive had pain, I"ve been though many treatments including PT, tens unit, bio feedback,injections, nerve ablations, you name it. I'm prescribed Cymbalta 60 mg for Fibro and anxiety as well as 225 mg of Lyrica. I have been on and off various painkillers too. I'm currently on a long acting oxycodone of 13.5 mg and once a day one 15 mg of IR oxycodone. This has been my regime for a few months now as I switched from 15 mg IR oxycodone. Now for those who are worried about me ODing...I understand. I actually hype-vigilant about my meds. (And I have my hubby and son who watch) Years ago I was on 15 mg Fentanyl patch for 10 months and came off it in one month with no side effects.
Right now I'm really struggling with this rotten pain. I have no appetite, either can't sleep or nap during the day.
Interested in more discussions like this? Go to the Fibromyalgia Support Group.
Thank you for your insights. I have recently been diagnosed with OA and am trying to find my way through it all. I live in a rural area and do not feel the recommendations have been very specific to my needs, so this is very helpful in my journey.
@migizii Welcome from one country person to another.
Some people would say I live in a rural area, 7 miles from the closest town, pop. 8000. But we moved here from a truly rural area, 120 miles to Walmart, in a town of 247. It's a whole different world living in remote places. There's rural and there's REALLY rural.
What challenges do you face with being rural with OA? Limited # of specialists within driving distance? Have you ever considered online access to doctors? There are so many options out there that we never dreamed of 20 years ago. I use the internet any time I want to know more about a medication or an illness. Right here in Mayo Connect is a wealth of information, and I really appreciate reading what other people have found that worked (or didn't work) for them. And it helps to know that you aren't the only person who has your particular symptoms.
Jim
My rural area is similar to yours. We have some specialists at the clinic in our town but I have had less than desirable outcomes (wrong diagnoses) at times, so it’s hard for me to trust their system. I read often online and ask for referrals and at times, make pretty long drives to see specialists, which is okay with me to get answers I feel more faith in. I gain a wealth of information from this site and am so thankful for it. It helps guide many of my decisions.
Do you have a discussion topic for chronic soft tissue pain such as fibromyalgia?
@cldmeyers, currently discussions about fibromyalgia are found in the Chronic Pain group https://connect.mayoclinic.org/group/pain/
I have moved your message to this active discussion about pain and fibromyalgia so you can connect with other members like @faithann64 @healingone @migizii @parus @rwinney @sandytoes14 @babette and many others. You may also wish to take part in these discussions:
- Fibromyalgia https://connect.mayoclinic.org/discussion/fibromyalgia-3/
- Feeling very sick, is it Fibromyalgia flare or something else? https://connect.mayoclinic.org/discussion/feeling-very-sick-is-it-fibromyalgia-flare-or-something-else/
- Wellness program for Fibromyalgia patient? https://connect.mayoclinic.org/discussion/wellness-program-for-fibromyalgia-patient/
- Fibromyalgia – Issues with sleeping https://connect.mayoclinic.org/discussion/fibromyalgia-8/
- What Distracts You From the Pain? https://connect.mayoclinic.org/discussion/what-distracts-you-from-the-pain/
@cldmeyers, how long have you been living with fibromyalgia? What triggers flareups and pain for you?
I was diagnosed with it back in the 1990's/2000. Not sure what triggered it, but a lot of pain and trials. I've been fine since then til I fell on December 10. It seemed to knock everything on both sides of my lower body a bit off. I'd say my knees are the worst, although I was already treating them for pattelofemoral (I think) condition, where my kneecaps didn't track when I bent my legs. I had been on pt since October, then I fell. It's now April 11, and except for a Nustep machine, no pt has helped that much. Now the Nustep is locked up because we live in a senior living facility and it's in a "common" room. Is there something I can be doing for my pain that goes up and down my left thigh and my ankles are swelling and I feel like I may have plantar faciitis on both feet/heels. Really frustrated. I'm 85 and have always been active. Afraid this will slow me down permanently.
I'm experiencing pain all over after a hard fall on cement in December. I haven't seen my doctor since the outbreak, but am journaling to her and will have a phone appointment on May 5. We could share what we learn.
@rwinney
Rachel
You have described your story so well in a nice summary .
You are one strong and resilient woman.
I am 56 year old male . My chronic pain ..turned very disabling since last 6 years
My diagnosis.
1) fibromyalgia
2) idiopathic ( doctors do not know the reason ) small fiber neuropathy
3) degenerative disc disease
4) cervical radiculopathy with left upper arm/ shoulder blade / neck pain with numbing and tingling in left hand . This is the worst symptom as of now .
Treatments :
1) trigger point injections
2) Botox injections at shoulder blade
3) facet joint injections
4) cervical epidural injections ( which might have helped 2 years back with tingling in hands not the shoulder or arm pain )
For my neck shoulder arm pain I am thinking about taking cervical epidurals one more time and see . If they don’t help I am thinking about cervical ACDF surgery .
For me feom the MRIs there is moderate central stenosis at C5 C6 and severe bilateral foraminal stenosis at that level . And at C6 -C7 mile central and moderate foraminal.
When I read about ACDF in patients with fibromyalgia there is research that it is not as effective as for non fibromyalgia patients .
Medications :
Lamical
Gabapentin
Tramadol
Percocet 5/325 as needed max prescribed 7 tabs / month
Supplements / vitamins:
Vit D3
B12 injections
Magnesium
Cbd oil
I am on disability for last 18 months: lucky I have good support from my wife and I still have health insurance from my employer. They haven’t laid me off yet .
I am sure I would need surgery for the cervical thing ( because on the latest mri compared to two years ago it had gotten worse)but it scares me and I want to try to postpone it as much as I can
Something I observed . I had Covid this January . Mike symptoms relieved in 10 days but after a week is when this round of cervical issue flare up
Good to find this forum
Why would you have not seen a doctor after falling and injuring your knees at 85? You indicate you like to be active so why further hinder that by not getting checked out? Knees are easy culprits for injury as are hips and when we’re older we need to pay more attention to them. You really need to have them seen! Hope all is good but better safe than sorry at 85.
Goodness, you sound like me, without the pain pills , the strongest I have had is Tylenol 3, do any of your medications help with the pain even in the slightest degree, I found the Tylenol 3 did take the edge off a bit, but until I stopped them they started to become a habit. I go and exercise as much as I possibly can and find it does help, but even that is not foolproof!
I wish I had an answer for you. Best of luck!