Dealing with Fibromyalgia and Severe Back Injury

I kept screaming till someone finally listened! It's been over a year! Anyway, I am waiting for a PA for spinal stimulator for neuropathy. So very many doctors!!! Finally the very last neurologist finally stepped up. Now up to ortho to get the PA done. I am believing!!!!!!

Hoping you feel better

Have you heard of ME/CFS? It is very often misdiagnosed as "just severe fibro"

I have fibro, and also a condition called hypermobile Elhers-Danlos Syndrome (hEDS). It actually explains my pain more. I also have rheumatoid arthritis, as well as inflammatory arthritis. What other symptoms are you having?

Another good thing I've learned is that if you have a doctor that refuses to accommodate you, i.e. handicap parking permit, pain relief, tests, diagnosis, tell them you want to see them document why they are refusing to in your chart. That may change their tune.

Make a log into your phone via voice recordings, Google assist, Siri, Alexa, etc. "Google add backpack at 6:45pm". You can extract the text from your recordings and take the accumulated information to your doctor. **Whenever you go to virtual visit your doc, record the visit. Explain that you need explicits of the visits to refer to later. Accountability will be 💯 from all. ❤️ and ✨️

Wow do I get what you're going through. Wading through the medical maze stinks and there's no map. I've found that who insures you makes a big difference. I've been through three. The latest one is the greatest disappointment. Do you feel supported by your insurance co?

Yeah they like to handle a lot of things what you could do is be very direct and ask her for the test.

You may want to get that rash checked. That put me something separate.

Glad to find other people here. Widespread pain, fatigue, anxiety and recently heart palpitations, hair thinning, and a rash on my chest. Ekg normal this heart thing is scaring me

Your definitely not alone. Been dealing with it since 1990

I actually found out that I may have MS but I’m still getting tested I get dizzy migraines nausea and pain when walking and moving a lot as well I also get foggy vision a

I bet. I want to a rheumatologist about 10 years ago and she told me to tell my doctor that's what I had but she wouldn't put it in writing and so the doctor didn't believe it and nothing was done.

Have you had your B12 checked recently?

Ankylosing spondylosis?

Mine turned out to be AS too. If I let myself lay down too long like I want to, I get worse. Every section of my spine has at least 2 herniations. I go to the chiropractor weekly and utilize their massage chair. I use a ZenBody shower head for the pressure. Heat and creams. All the cannabis derivatives in those creams or tinctures help. But I’ve been in pain longer than I can remember. If I could afford another ketamine series I would do that for the pain relief alone. Sleeping positions are crucial. And not taking something that will make you sleep so hard your body doesn’t move positions naturally in your sleep is a big one for me too. I use cupping at home. Kratom for 3 days at a time when the flare won’t simmer down. I have to eat light foods. Grapes in yogurt. Saltines. Toast. And walk when I don’t think I can. It’s a lot of self care really. I also like drinking tea to calm my body down. I can’t do soda or too much sugar or too much caffeine. I put a lot of energy into making my spaces very calming and relaxing so I don’t get too depressed while feeling overwhelmed with pain. And I learned how to say “no”. Which sucks when it’s your kids asking to go to the park. But if I go to the park while I am unwell, I risk not being able to beautify them for picture day. Noting that the consequences of doing something can have a week long effect is good for how I set my expectations of productivity on myself and not the world’s view.

I was diagnosed about 7yrs ago couldn't understand what was going on with my body. Since I have suffer from depression too, my doctors have me on Duloxetine and Gabapentin as a regimen for my pain. It's debilitating and I have no emotional support at home since my husband doesn't understand why I'm in pain and in bed all the time

What is AS?

Have you ever looked at AS ? This can go hand in hand with fibromyalgia. For years I was told over and over I just had fibromyalgia and I kept telling them ok but there’s something else too. Only after many years later did a doctor say I have AS and fibromyalgia. Like you my several injures could have brought on AS you might want to research this. Be your best advocate do not stop looking for answers, you know yourself the best.

If you feel comfortable sharing, what are your strange/weird symptoms?

Get an x-ray. Found out my spine is degenerating. Gotta wait to do MRI for more answers

I am sorry for your pain. I can relate. I get nausea, migraine, shakes, and dizziness when my fibro is bad. I take Tizanidine for the fibromyalgia, and add Tylenol and herbal teas to help the muscles try to relax a bit. Sometimes it helps. Also, I keep in mind that it will get better.