Fibromyalgia -- Need help on how to handle severe pain

@ripley: I re-read your original post, and I was struck that you say your rheumatologist diagnosed your fibromyalgia, but then sent you to your GP...in my estimation that rheumatologist FAILED.
A rheumatologist diagnosed me, prescribed medications, etc., and along the 30 yrs or so that I've had the misfortune of dealing with fibromyalgia, it has been rheumatologists who have monitored it along with the medication(s).
You need to concentrate on locating a QUALIFIED rheumatologist to monitor your fibromyalgia. If you belong to the site Nextdoor, write a post asking members within your area for names (and contact info, of course) of RECOMMENDED rheumatologists, particularly if members are being treated for fibromyalgia. This does not violate privacy guidelines. I've belonged to Nextdoor for about 3 yrs now, and have obtained leads which I then vet and decide whether or not to contact the recommended doctor(s). I did that recently, asking for recommended private practice neurologists who are certified to do nerve conduction studies (not all neurologists are), and also private practice podiatrists. I invested the time and energy into researching the names given to me and now have upcoming appointments with doctors that have backgrounds and credentials within what I require to address specific needs. You can do likewise if you want recommended doctors from within whatever medical group you belong to (in the event that your insurance doesn't provide the freedom to see "outside" doctors). JUST MAKE SURE TO ALSO VERIFY WITH YOUR INSURANCE THAT the chosen doctors are IN-NETWORK, and thus avoid unexpected (and unwanted!) surprise costs.

But BOTTOM LINE: You need a QUALIFIED rheumatologist who is educated in all the aspects of fibromyalgia. Mine is, and she knows the intricate and most definite contributing factors of other pain producing disorders that I have, such as polymalgia rheumatica and a host of others. She has offered medications but respects that I am highly sensitive to whatever unfortunate side effects/complications they can cause, so she does not "push" when I decline. She is fairly young, around 40'ish, which to me is a godsend because she won't be retiring anytime soon! TWO absolutely wonderful former rheumatologists retired within last 12 yrs, which devastated both my husband and I (we see the same doctor, he for osteoarthritic and rheumatic issues).

I EMPHASIZE: Search for and establish a relationship with a knowledgeable, compassionate rheumatologist who respects the fact that fibromyalgia is REAL.
Please let me know how you make out on this journey. If you are at all interested, I'll share with you what has/hasn't worked for me, and aim to answer questions. What I used to tell our children and my students: No question is ever a dumb one if it's meaningful to you.

For now, invest in a medium-large heating pad. I love using it, and it really helps with the leg pain, and all areas that benefit from the warmth. Our daughter gifted us a model that covers the base of head/shoulders/back, but I use it wherever I need it. Has 4 heat levels: Warm, Low, Medium, High. Check out Sunbeam, has this info on the label: P.N. 12899-Y.
I'm going to hit REPLY and hope that this will actually post....the last two that I tried sending to you have not...If it doesn't work, I'll try again. I copied what I've written just in case, so the info doesn't just go into cyber-limbo. 🙂

@mamawnebel
I am surprised that a rheumatologist prescribed this medication since it has the very real potential to create issues that fibromyalgia patients already encounter, and thus can very well aggravate, such as arthralgia, muscle spasms, myalgia, sleep disturbance.

Topirimate (generic form of Topamax) has many caveats, none of which I was informed by the neurologist who prescribed it in attempt to deal with my intense migraines. Caveats for this medication for anyone with glaucoma (can increase eye pressure), cold hands/feet (Raynaud's), gait disturbance and many more.
I took the brand named one, but check online for side-by-side listings of the very real medical issues what that this medication has the very real potential to create. I wish I had known 20 years ago, but I unfortunately had such trust in the private neurologist who prescribed Topamax, Depokote, and other meds. I'll address the Topamax because I had to cease the Depokote after just one dose: Yes, I lost significant weight (which I had no need to at the time), over a period of about 2 to 3 months. Had severe dry mouth, a real problem when as a teacher I talk all day long, but was also accompanied by hyper salivation which then caused a disgusting, embarrassing "foamy" substance to form at edges of my mouth. My tongue felt hot and dry, and would literally get stuck to roof of my mouth. Drinking water to combat the dry mouth then created the need to take bathroom breaks, which was difficult while teaching back-to-back classes (in a high school). (Everyone knows that teachers are supposed to "hold it" until lunch time or a prep period in which you don't have students!). That in turn created bladder problems. I wasn't making connections with any of these and other issues as being side effects. I had many more...but when the auditory and visual hallucinations set in, along with night terrors, overwhelming fatigue and musculoskeletal issues, brain-drag, and hair loss, I visited my primary care doctor who did a "check" on the drugs I was on, and she firmly advised me to eliminate this med and two others. I did so carefully, with the guidance of a neurologist (recommended by my primary) who created a "weaning" schedule/calendar for me. (Not supposed to "just stop" this and other meds, or risk potentially fatal results.) It was HELL, and took many MONTHS to accomplish this, but I succeeded. I had been going through a prolonged, problematic and early menopause, and when I stopped menstruating altogether, the migraines lifted! So no need for harsh meds that had made my life more of a hell than I was already dealing with.

I share all of this as a way of bringing awareness that not all meds are a panacea. They can also open up a veritable Pandora's box...

All medications come with adverse reactions. Every single one.
This is not medical advice: this is information taken from a reputable medical website: UpToDate.

Topical: Gel 1% (OTC or Rx) (off-label use): Apply up to 4 g to each affected area up to 4 times daily; maximum dose per area: 16 g/day; maximum total body dose (all combined areas): 32 g/day. Note: Dosing is based on general recommendations from manufacturer labeling.

Adverse reactions:
Topical gel: >10%: Local: Application-site reaction (≤84%; including acne vulgaris [1%], alopecia [2%], application-site dermatitis [4%], application-site edema [3% to 4%], application-site irritation [< 1%], application-site pain [15% to 26%], application-site pruritus [31% to 52%), application-site rash [35% to 46%], application-site scaling [6% to 24%], application-site vesicles [< 1%], contact dermatitis [19% to 33%; nonapplication-site: 2%], hyperesthesia [3%], hypertonia [< 1%], maculopapular rash [< 1%], papule of skin [< 1%], paresthesia [8%; nonapplication-site: 1%], purpuric rash [< 1%], skin carcinoma [< 1%], skin photosensitivity [3%], vasodilation [< 1%], vesiculobullous dermatitis [4%], xeroderma [25% to 27%; nonapplication-site: 3%])

Hepatic: Increased serum alanine aminotransferase (2%), increased serum aspartate aminotransferase (3%)

Just for comparison: here is hydrocodone with acetaminophen: (frequency undefined): Hepatic: Hepatic necrosis, hepatitis

Are you taking any of the drugs for fibro, like Cymbalta or Lyrica? I would like to avoid those so am trying medical marijuana--still trying to find a dose than helps. I have called many rheumatologists in my state and haven't found one yet that helps treat fibro, and not just diagnose. But I'll keep trying. (As far as your Dr, you don't happen to live in MN, do you?)
Have you ever gone to a "functional" doctor? They try to treat naturally w/o drugs. Very long wait time here to see one, I couldn't get in earlier than January 2024. Thanks.

No, I altogether refused the Cymbalta and the Lyrica, having researched both in depth. I had one doctor even try to sell me on the "double target" angle: target the depression AND the other problem(s). Emphatically no. Wasn't going through weaning off anything else again either. As for medical marijuana, that is a personal decision that you must test out for yourself. I just didn't want to deal with the whole aspect of trying to find a dose that helps, and the best combo for me. I also have medical issues that I took into consideration.
By functional doctor are you referring to a physiatrist? No, not PSYCHiatrist, PHYSiatrist. I have found none within an acceptable driving distance. But I am very much looking forward to meeting the neurologist that I'll be seeing in about 3 weeks. My primary was happy that I chose him. Says he is an older man, real "old school" thoroughness in helping his patients, doesn't just pass them off to other doctors. He LISTENS and is not dismissive. He's also board certified as a neurophysiologist so he can perform nerve and muscle studies, and is one of only 2 others in our section of Westchester.
I have an idea for you: Google to see what organizations (professional) are within your state. Search through the website for info on doctors according to sections of your state. That is what I did when I desperately need a specialized ophthalmologist and the only ones were in other states. My time spent researching paid off because they did indeed have a listing of ophthalmologist specially trained in field of immunology related to eye issues. Found three and zeroed in on the one that checked out as being the best for me, a mere 28 minute drive (one way) versus 2 1/2 hours one way (Yale in CT).
So try that out. You have to advocate for yourself, and invest time and effort in finding what you most need.
Another idea: Call major hospitals/medical schools within your area. Follow the same advice as what I wrote before. Ask for head/supervisor of Dept of Rheumatology. Make it clear that you are seeking rheumatologists who are education with treating fibromyalgia.

The road ahead is arduous but adopt an "I CAN" attitude. Don't allow yourself to give up. You have no idea the HOURS that I invested while searching for the specialized ophthalmologist who successfully eliminated the uveitis that attacked my left eye and then my right. My regular ophthamologist realized he couldn't cure the problem, after 4 months of what I considered "toxic" eye drops.

Best of luck to you.
I'd appreciate hearing how you progress with your search.😊

I'm not the person who you were replying to, but I do have fibromyalgia (diagnosed at Mayo Clinic in 2017) and live in MN. What's helped me the most with pain and other symptoms has been 1200 mg daily of gabapentin along with physical therapy. I tried Cymbalta and went through awful side effects including feeling suicidal for the first time in my life, and tapering down off of it was hell. I've had no problems like that with the gabapentin and although it's not perfect (MN winters are still pretty rough with the symptoms) it's more manageable. 2/3 of the year I walk around like the tin man needing the oil can, so it's like the fibro has aged me prematurely, I feel like I'm 80 much of the time rather than my mid-50's. I would love to see a functional doctor but haven't checked into one yet, and have no idea where I'd find one. Is anyone here from MN seeing a functional doctor and are there any at Mayo?

Hi @stephanieml, Mayo Clinic offers integrative medicine and health. You can read more here:
- Integrative Medicine and Health https://www.mayoclinic.org/departments-centers/integrative-medicine-health/sections/overview/ovc-20464567

Integrative medicine and functional medicine are similar and the terms are sometimes used interchangeably. They approach healing in slightly different ways. Integrative medicine seeks to understand you as a whole person. It uses many different types of therapy to heal your mind, body and spirit. Functional medicine seeks to identify and treat the underlying cause of your condition. It centers on the idea that one condition may have many causes or one cause can have many conditions.

Integrative medicine uses a combination of therapies and lifestyle changes to treat and heal the whole person. It focuses on your complete mind, body and soul and uses an evidence-based approach to improve your health and wellness. Integrative approaches are used to help people with medical conditions — including cancer, chronic fatigue, chronic pain, fibromyalgia, diabetes and many others — feel better by reducing fatigue, nausea, pain and anxiety.

I think the thing people like the most about integrative medicine is that you work closely with the care team to understand and address your needs.

Stephanie, when you were diagnosed with fibromyalgia in 2017, did you attend Mayo Clinic Fibromyalgia Clinic?

Commenting here so I can tag along on the discussion.

Also am in MN, also have been diagnosed with FM and have been on Cymbalta for a decade. I do take Remeron to help with getting back to sleep due to nature calls and pain. Besides that, I manage by avoiding the pain flare triggers (repetitive bending is the biggie for me) and doing PT - meanwhile am living with the lower-level pain. I'm also much older than you. Also have arthritis in both shoulders and both hips. Had the arthritic spurs taken out on the left in May, will do similar surgery on the right - then I can look at doing a replacement of the left hip. I take Tylenol, but can't take NSAIDs because of bleeding issues.

At my annual exam a few weeks ago, I asked about adding gabapentin. Dr. was reluctant, but I may ask to try it.

We are complex creatures ... thankfully, because it means oftentimes to get something fixed you need to fix the WHOLE, not a lot just a little, in activity, food, stress management through understanding life issues with clearer thinking (mostly CBT), all this resulting a restful sleep, one of the core problems with Fibro.

I really hope we all first give a chance to measures that are readily available ... without waiting for pills and therapists, both being a lot more time consuming and stress-inducing. So here's on top of the Mayo site above:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6016048/
Evidence-based interdisciplinary guidelines give a strong recommendation for aerobic exercise and cognitive behavioral therapies.
https://www.arthritis.org/diseases/fibromyalgia
Exercise is recommended both under Treatment and Self-Care… But Self-care also mentions healthy food, restful sleep and reducing stress through mindfulness, CBT and SUPPORT from fellow fallen humans, often with similar challenges especially mental health.

Is general healthy life style has helped me stay free of most pains in an 80 y.o. body, I can never be sure about. But in life there are rarely 'sure-shots' we need to go for, only likelihoods and possibilities.

So is downing first thing in body coffee a good idea than cold tall glass?
Let's do the basics and if even then things ain't good-enough, seek more. And can we do it in a 'supportive circle of Fibros?'

Hello and thanks for your great reply. Yes, I went through and completed the Fibromyalgia Clinic. It was helpful to a point, but since then and dealing with regular doctors at Mayo and elsewhere, I've felt pretty misunderstood. It took years to get most things dealt with because with fibro pain is only one symptom, and when you've got 10 different things going on at the same time, the doctor only wants to hear about the top 3, and it takes a while of suffering while trying to wait for all of the different appointments and in the meantime, being told to take as much Tylenol as I can to address the extra pain. I do appreciate you sharing the link for the integrative medicine and health, I wish I would've know of or been referred to them by now, thank you.