So confused - fibromyalgia and bones aching severely

Hello! Sorry for long delays - I did watch the YouTube video! Thank you so much for sharing!!! As I watched, I did love the breakdown of things in the “All Systems-Go” realm!!! i could have misunderstood it & planned to watch a few more times to make sure I’m getting it all - but I do believe I’m pursuing exactly that approach already -
I have the typical team of specialists - Rheum, Neuro, Derm, PCP, Psychologist, Medication Mgmt, Therapist, Chiropractor, meditation/Tapping/Affirmations/Journaling as well as attempting to find a creative outlet (or any creative juice at all to flow 😉 hahaha) -
Would you agree that I am trying to come at this from all angles to ensure well-rounded approach? I’m also trying to soak up any literature/movies/blogs/YouTube channels, etc. That may have any info at all useful! I did watch the documentary - Sensitive: The Untold Story and that definitely hit close to home - before/during/after diagnosis I’ve rec’vd - so it’s nothing *new* per se, but puts it into words to be able to share with others a new aspect of how I experience the world without going deep into the depressive context.

Thank you so much for checking in - and don’t be strangers!!! I just sometimes fall off the face of the earth for a spell 🤗

I would see a specialist if your MD won’t test for the cause of swollen lymph nodes just to be certain you haven’t been given the “default diagnosis” of fibromyalgia for pain of unknown origin and something of greater concern is not being ignored. Lyme disease, autoimmune issues, and many other disorders have share symptoms with fibromyalgia.

I have bone pain too. For me it is more arthritis like, but headaches, visual disturbances (not floaters), bruised skull feeling, ear ringing every day (no, alpha lipoid acid did not help), IBS like symptoms…I’m afraid these are all very common, and unfortunately just something we must learn to deal with as we learn how our bodies respond to things. Medicine has been somewhat helpful at best.
I’ve had fibromyalgia diagnosed for over 8 years, and prior to that had symptoms but went undiagnosed for at least 12.
Here is what I discovered, and I hope it helps shorten your path to getting some relief:

IBS - My IBS like symptoms were due to leaky gut which caused new seemingly out of the blue sensitivities to foods, for me it was gluten and dairy, eggs, some unknown frozen foods additive, and mold (blue cheese, hidden spoiled spinach leaves in salad, etc.) . IBS has
improved by taking a daily very high quality probiotic for a year and, continuing permanently, as well as digestive enzymes specifically to help with accidentally ingested (hidden or cross-contaminated) gluten. Further helped by eliminating high fat meats and all but the occasional dairy product. I had to go through three rounds of longer than the usual elimination diet protocols to finally figure this out. To waste less time, I recommend medical allergy testing or journaling diet and bowel issues in the same notebook to see if a link exists. For some, the link is not food but hormonal.

Thyroid function can affect GI too, and is easily tested with a simple blood draw.

Headaches - I take Aleve (Naproxen) 1-2 as needed for only the worst pain, as overdoing any NSAID can cause other serious problems with prolonged use. Individuals vary with which pain reliever NSAID type helps them. I have learned to live with the more moderate pain daily.

Likewise, I have learned to deal with a lot of pain as my “new normal”, as I do not like taking medication in general. I used to work in the ER, and in the ICU, and the more meds one takes the greater the chance of side effects, interactions and organ damage. I also observed that the longer pain medication is taken the less tolerant the brain becomes of even mild pain. But again, we all differ. Have an honest discussion with your doctors.

TMJ - If actually TMJ must be assessed by a medical specialist, who can advise treatments, but if “TMJ like” pain, I highly recommend acupuncture and/or guided relaxation meditation.

Relaxation and Sleep - Acupuncture relief is partial for me and very temporary, with the best effect the following day and decreasing over the next 4-10 days. Some do better with it. Meditation has done a world of good across the board for me as far as attitude, relaxation, help with sleep, and the anxiety or stress having all of these issues causes. My Integrative Health NP recommended I start with the free guided meditations available from Insight Timer. Ask yours if they are aware of any other quality apps because some offered online are shady.
Also, taking Magnesium Calm supplements ( check with MD first) and Melatonin if still sleepless has helped me rest which reduces some of the pain, physical and emotional fatigue of fibro.

Hand Pain - Etsy offers shops with warming mitts and wraps, even slippers for arthritis. I have not tried Voltaren but I hear it works for many. Ask your doctor.

Floaters - depending on the type may be nothing or a serious eye condition. I’d get an eye exam and speak to them about it. For ages I’d see odd random little dots of light or dark wander and swirl across my field of vision in the absence of headaches. I was told after an exam these were not a concern, but some types are early warning of specific issues. For no apparent reason they became less common and eventually resolved on their own.
Some visual disturbances are linked to headaches and migraines. I had terrible migraines when my fibromyalgia and hypothyroidism first began as well as a few types of bizarre visual disturbances which I later learned were caused by both hypothyroidism and artificial sweeteners (pre diabetic, told way back in the day to drink diet beverages), although I have no trouble with Stevia. For me, even though my thyroid has long been managed, artificial sweeteners as well as erythritol, monkfruit, and sugar intake and caffeine even in small amounts can still cause can cause some visual issues.

What does help me psychologically in general, and this may sound silly, is making a point to see my strength regarding this instead of my reduced abilities, being grateful for what I have that really matters vs. focusing on what I’ve lost, being honest about what I can do vs. grieving what I cannot, having a sense of humor about living with fibro (not easy to acquire) and focusing on new activities, like painting, crafts, my pets, my garden and not being ashamed of having to take breaks during almost every activity. Don’t be embarrassed to practice self-care and honoring your body and its new needs.

What has helped me greatly is trying to eat the healthiest diet I can tolerate, wearing my Fitbit which helps nudge me to be active, and being honest with my spouse and family about my needs rather than ashamed.
None of us has asked for this disorder, you did nothing to cause it, and you may not be able to exercise as you once did or look as fit as you once did, or be able to be what you once were (I was training for a triathlon when symptoms began for me) but there is nothing to be ashamed of.
Best Wishes!

I was diagnosed with fibromyalgia when I was in college. It took several years for a doctor to decide that's what it was. Reading some of the posts on here I feel like my 20 year battle is not as bad as I thought it was. Since I have had mine under control most of the time without medication. When I first got diagnosed they tried so many drugs and none of them seem to help. I was finally put on Cymbalta and that drug was the worse, I stopped taking all my drugs and things got better for me. I learned ways to help myself without drugs however there were times of the past 15 years it has flared from time to time, but within a few months I can usually get it under control. However I have now battled with it worse than ever since September and I can't seem to get it back under control. I am also having symptoms I hadn't had in the past. In the past I mostly had aches and pains, sleep issues, and neuropathy. This time I am actually passing out, feel like even my bones hurt, lightheaded and dizzy all the time (I have had to give up driving), lymph nodes are constant swelling especially in my neck and underarms. The symptoms just seem to be adding up. I am scheduled to go to Mayo at the end of the month for the Fibro clinic and in July to the POTS clinic in hopes to find some help and some relief. Hang in there and try to find something that works for you.

Dart0207, Have you had COVID by chance? It worsened my fibro pain and other maladies. I pray you get some answers from the Mayo Clinic.

My very wise primary (he retired a few years ago) told me after he diagnosed me with Fibro that the pain could resemble RA. I truly believe that.

I pray you get some answers. I will say this to you, Thyroid Disease tends to go along with Fibromyalgia and so does Arthritis.

P.S. Chronic Fatigue Syndrome can cause swollen lymph nodes. Fibro and CFS are twin sisters and a lot of times you can have both.

Blessings & Hugs...

After 40 years of this continuous pain I have not had any relief. People talk about flares of pain, well I hope I never get one because I can't handle what I have now. You are not alone.

What was your experience at the Mayo's Fibro clinic, were they able to help you? Did you go to the one in Rochester? Thanks.

I fear FM (fibromyalgia). Is turning into the same things as asthma, arthritis a catch all for things they don’t know. They know there is something going on and they don’t know how to treat it.
I started having problems when I was in my 20s. They did not have a name for it and called me many names that I felt offensive by. Things are better for the people who now are coming down with it, but 40 years ago it was not the best.
. Things are better and I need to control my stress and not allow other people to stress me out.
I wish everyone the best and I hope they figure it out.

I'm sorry. Fibromyalgia is a bad, chronic disease. I was diagnosed 22 years ago. I find that I HAVE to take both vitamin D and Magnesium. Also taking baths with Epsom salt is a good thing for fibromyalgia. Yoga is something I do. You don't have to be perfect at it. Most of the stretches I do are on the ground. but as I stretch I think of the blood flowing to my muscles. When I get low or forget to take my vitamin D I feel it in my bones and my jaw. I also find listening to music I enjoy helps my brain because it louder than the pain. Any art gives your brain a vacation. Best of luck to you. ❤️

I was Dx’d in 1999-2000 at the time it was a catch all but Mayo Clinic made my Dx so ppl kinda said OH OK ok if THEY say so. (Good Thing as they listen)
I have massive long bone pain these days. I just had test that shows Metamyelocytes I have no idea what this means except I keep seeing bone marrow and blood cancer attached to everything I read about it. So, now I’m wondering if there is yet another Dx coming.

Hi. I totally understand and feel everything you described in your message. I was diagnosed back in 2015 and I honestly ache every day of my life. There are days that are better than others but nothing seems to relieve the muscle aches I experience. I even sometimes describe it as my "blood" hurts. At least, thats how I feel. I am so sorry your too are dealing with Fibromyalgia. My doctor tells me all the time that I need to get out more and move around more. He says that people with Fibromyalgia find more relief when they are more active. For me, I have no energy to do that personally. I rarely leave my home unless it is going to a doctors appointment. It sucks but I say it beats the alternative. Thank God I (we) are ALIVE!!!! Stay strong and hang in there. I am a Believer and I firmly Believe that one day, someone will find a "cure" for this terrible disease. 🙏🏽