Fibromyalgia pain: Let's connect

Hello, wheelerma and fafsfat. I've been on this fibromyalgia roller-coaster for 35+ years, when it wasn't identified as a legitimate 'illness', when it was considered mental, or anxiety, or depression, or all in the head, or (females) hormonal and I was pretty much dismissed. I'm amazed at a video I saw on youtube about what is now realized as actually a very painful condition, that creates havok in our lives.
I have been through a bunch of trial and error meds. Lyrica did help me a lot, with leg cramping, RLS, neuropathy, and overall pain. Gabapantin helped also. I'm off both now. I take Robaxin for muscles, helps. My main pain relief, sleep relief, anxiety relief, depression help is medical marijuana. I take 1:1, CBD:THC every night before bed. I use the tincture drops, about an hour before bed. I sleep now, all night through, with little pain and enjoy the rest I get. It's an amazing change in my life. Nothing has helped me as much as this combination.

There are times I have more pain and issues, so I may increase the nightly dosage a bit. I also use CBD drops during the day if needed, and/or the 1:1 drops, just lesser amounts. I'm totally surprised at the good results, that I'm off most of the heavy pain, etc phara. It's lovely.

I also HIGHLY recommend heated pool therapy. I go to the therapy pool 2X weekly when physically able and spend an hour in the 94 degree water, walking and moving, getting the exercise I must have but oh, so softly and w/no pain. I am pain free.....almost....when I step into the water. Walking, of course, is also helpful.

So, now you have my story. I now understand the condition. I know it causes actual increases in pain whenever I have anything done, like dental or removal of skin lump or hit myself or falll or whatever. More pain for us is normal and legitimate. Our pain nerve/brain connections are super sensitive and make it worse for us. What a wonderful experience that was when I learned it's now scientifically supported and understood. Wow! What a joy to know what's happening, it's real and I'm not a wimp! I hurt like the dickens!

Let me know if any of this helps. It does for me. Blessings, Elizabeth

Let me know what you learn about mold toxicity. I have thought of this along with many other contaminants in our water, soil etc. I bought a home mold kit but just need to get my mind together to figure out how to do it. I have had many myofascial release sessions thru the years. Helps for a short time and then it’s back. Tens unit helps and heat. CBD and combined ratio of CBD/the made my pain worse and I tried many varieties. Apparently I am one of the lucky ones that the c1a receptors in my spine is goes haywire. I may have the receptor name wrong, but nevertheless, just another let down and very expensive

Just picked my kit up mid week! Will set it up tomorrow, Saturday and let you know. In reading the directions they say I need to set up one inside and one outside! will keep you posted on that!
II had my MFR a week ago Thursday and it was horrible! The person said she knew how to do it. All she kept talking about was Mold toxicity! She just Blew my off on Fibromylgia!
Had my old body therapy person a procedure call The Trager Approach! Look it up if you have a chance! Anyway I went on line and found someone who is a licecened practionare of it. Had it done this last Tuesday and made a Big Difference!
Have had one of the better weeks.
Good Luck!
Sundance(RB)

Go figure so many of the so called are BS. The professional that did my MFR was shocked because I wasn’t flinching at how deep and hard he was going. He said he has never worked on someone with so many knots etc, like a steel beam. It felt good to me, but felt bruised the following day day, but then again my tens unit makes areas feel bruised as well because it does the same type thing. No never heard of the Trager Approach. Have you heard of anyone with success from Ketamine infusions?
I had Myers infusion IV’s for years but never Ketamine and a friend of a friend has Lupus and Lymes disease and she says she feels almost like she is healed.
Thx and keep me posted on the mold kit

Just looked up Ketamine. Now that I remember we used to do it on our horses. Never understood it! I'm just funny about injecting anything new in my body. I have a history of bad reactions to new medications!
Google the Trager Approach! Very gentle massage approach! The thing that upset me about the person that did the MFR on me did the same as they did on you! VERY HARD!
This was after I told her not to try and dig knots out! I've had body work done on me for over 60 years! So I know my body and how it reacts!
Just starting to moving around this morning, so I will keep you posted on the Toxicity test!
Thanks,
From The Land of Enchantment!
Sundance(RB)

@fatsfat I might be looking into Ketamine for chronic abdominal pain that keeps getting worse and so far the injections tried, tests ran, labs, scripts do nothing. It now goes down the middle 6 or so inches wide from pelvis to under xiphoid. Lost appetite now and THC works now more. Read about Ketamine for depression but also for pain. Though I think pain is a 5-6 course treatment and costs around $2-$3k, suppose to reset brain and help nerves. Now a lot of pain clinics do it and it was just on 60 minutes for bad depression. Though nervous as a serious drug but when you are in pain all of the time and end of ropes. Rob

Has anyone having had the COVID 19 vaccine had a fibro flare-up? Just curious. I know the yearly flu shot causes a flare for me. Having the 1st round of the vaccine tomorrow.

Hi @parus

I had my first vaccination for COVID in mid-January and will be getting my second one tomorrow. I did have fatigue and muscle/joint pain for a few days. I will be interested in hearing about your experience as well.

@parus I never thought of it ,but yes after I had my first vaccine shot I couldnt sleep that night for the pain. But it only lasted for 1 miserable day thank goodness . My arm was sore at the injection site like when I would just get the flu shot but my back,legs arms hurt like fibro flare . And another thing if you or anyone has dry mouth you will feel 10 times drier . I was drinking water all night and next day but it to wore of eventually . So keep losengers or water handy .

@parus Good question! I had my first dose 2 weeks ago, and go back this coming Sunday for the 2nd dose, using Pfizer. Frankly, anymore, I am having trouble figuring what may be a flareup, and what may be the myriad of things going on with me. Fibro is the least of my concerns, honestly. Some days are good, some okay, some just rotten.

I'll watch what happens this weekend.
Ginger