Feeling at my wits end with Chronic Pain and Fibromyalgia

Posted by Jen, Alumna Mentor @sandytoes14, Aug 19, 2019

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.

@jimhd

@faithann64

I'm 69, and I'm experiencing some similar pain issues, with OA in a few areas, compression fractures in my lower back, have had spurs scraped away, bursitis and torn menisci repair in my right knee, and recent surgery on my left ankle that was unstable. The orthopedist repaired torn ligaments and put in a permanent internal brace. So, getting older is hard.

I see a pain specialist, primarily for my peripheral polyneuropathy, and I have several good doctors for my various pains. I haven't seen a rheumatologist yet, but maybe we both could benefit by finding one. Arthritis is probably something that can only be cared for by treating the symptoms, usually with NSAIDS. There are lots of creams for arthritis pain - I use Voltaren, a topical prescription NSAID pain reliever. Of course, every pain medication is temporary. The trick is finding things that work for you.

So, are you thinking about what steps you can take to treat your pain? Your primary care doctor should be able to get you referrals to the appropriate specialists. If you talk with a pharmacist, they could be a great resource. Best wishes.

Jim

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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.

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@migizii

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.

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@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

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@jimhd

@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

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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.

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Do you have a discussion topic for chronic soft tissue pain such as fibromyalgia?

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@cldmeyers

Do you have a discussion topic for chronic soft tissue pain such as fibromyalgia?

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@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?

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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.

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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.

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@rwinney

Hello Chris

I sincerely thank you for such a heartfelt response. You pegged me without a doubt! I do care alot.

I will first start by saying that my whole life I have been anti drugs, alcohol, smoking. I have been forced to become accepting of my need for pain medication. Early on I resisted meds and tried my best to use inner strength, will power and natural remedies. It was a fail and I eventually opened the door to medications out of necessity, impatience and desperation. Currently I take
Norco 5-325 (hydrocodone/acetaminophen), Lyrica CR 165mg and Duloxetine 60mg. These were all drugs I agreed to for quick support while Doctors and I continued to trudge through to a final diagnosis in February.

Now that I have gained knowledge while still working on acceptance of my diagnosis, I realize it's with me for life...It's time to stop masking pain, attempt to regenerate nerves (if possible) and allow my body to move forward as healthy as possible. In finding that balance I am building up my supplement/vitamin intake, decreasing sugars and processed foods, trying to keep my activity balanced between light excercise (as my body permits) and appropriate rest.

I want to find substitutes for my current meds. Ones that will not cause long term harm to my brain and organs, however, I know there are no guarantees with anything. It's a scary thing because I want qiick help when I need it for pain and I'm not ready to wean off meds until I know an effective back up plan in is place.

As for my pain... I feel like my body is a loaded weapon with a plethora of symptoms. The most debilitating pain stems from my legs...
numbness, pins and needles, cold flush, sunburn sensations, vibrations, heavy and dead feeling. Cramping, pain and tightness in calves and multiple days with unrelenting burning ache. I now have one speed of walking and need to stop and take breaks. If I can drive, it is limited to 15 minutes max one way and that may mean putting the car in park at traffic lights or just coasting when I can to avoid using my legs.

My right foot has constant pain in big toe joint with shocking jolts at times. Across shoulders down arms burn with weakness in hands and fingers at times or deep bone aches with tingles. Right shoulder and arm will be stricken with pain and throb then go numb and tingle. Neck and up back of head get tight and sore at times. Scalp goes through days of sensitivity to touch. Difficulty regulating body temp, although this has gotten much better since B12 has leveled off, as did palpitations, dizziness and heavy breathing.

Once I fall asleep at night I'm generally able to stay asleep. It's about getting to that point though with the discomfort of pain and various symptoms. Many nights I lay awake for an hour or two before I can find a comfortable position or compromise, either waiting for the next hydro to kick in or finding an alternative like heat.

My pain meds do provide comfort at times and other times they simply can't keep up. I take 3 hydro on a good day and 5 on worse days.

I try so hard to keep stress to a minimum because that entices my nerves but some days it wins out. My daughter just went to college and my husband and I are adjusting to being empty nesters after 26 years.

That means my son is 26 and is getting married next June. He just got a beautiful German Shepherd puppy! My children are my best medicine and for me distraction can be key.

I do enjoy these positive parts of my life and am very grateful although my limitations frustrate me tremendously when I think of not being able to be what I used to be in regard to grandchildren one day.

To conclude, thank you so very much for taking the time to read this super long post! I look forward to any insight and advice you wish to share or offer and hope you are having a pleasant day. You are a gem!

~Rachel

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@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

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@cldmeyers

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.

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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.

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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!

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