Could it be Fibromyalgia

@SusanEllen66

I googled a "map" of where the pressure points are, and said ouch each time. My tremors in my left arm go back and forth. The nighttime full body tremors are fast. I had a DaT Scan done, and it showed no traits of Parkinsons. The first time the tremor in my left arm happened, I called my Shoulder Orthopedist. His PA called me and said put some heat on it and it if gets worse, go to the ER and let them check to make sure it's not a stroke. I was able to get video of it happening, and at my next appointment, showed it to the PA and she was baffled. I showed it to the Neurologist, and that coupled with the full body tremors at night, are why I had all the tests done. I had a 4 day long at home EEG, when the Neuro downloaded the films, she could see the full body tremors happening while I was sleeping. However, she said my brain waves were normal during the tremors so they aren't seizures, but she has no explanation as to what's causing them. Everyone says I should be happy that the tests didn't find anything. But it's hard to do that when nobody knows what's happening. I'm thankful that when I saw my primary care a few weeks ago, she was open minded enough about either Chronic Fatigue or Fibro.

@kjs831 ok. Have you checked out the “trigger points”?

@daisy17

I owe you an apology, I'm sorry I didn't research more before replying. My Dad is a Psychologist whose area of specialty is Addictions. He always says don't read the side effects for a drug unless there is a major problem, because there is actually research that shows your brain will automatically think you will end up with side effects. Do I listen, not all the time as you can see.
LDN sounds like it might be pretty helpful. Do you see a specialist for your Fibro? or just your PC?

@kjs831 That's OK, no offense taken. I don't go along with the belief about not reading about side effects. If I am going to take any medication, I want to know what side effects to be aware of. I know some people think your mind will make you think you have them, but I don't really believe that. Some of the drugs that are FDA approve for fibromyalgia are very powerful, and can affect your brain and nervous system. Some also cause dependence and are difficult to stop without withdrawal symptoms. I want to be as informed as possible. The side effects with LDN are very mild and often go away as your body adjust to the drug.

I went to a pain clinic to get my prescription for LDN, but the PCP I have now also prescribes it and says many of her patients find it beneficial. I was diagnosed by a rheumatologist who said I should take Cymbalta, but after reading about that drug there was no way I would take it. My PCP is who I see now for treatment.

Anyway, LDN works so well for me that I always want to tell people about it.

@daisy17

I had the Flu the week leading into Christmas. I was coughing so hard I ended up going to an ER. They gave me a heavy dose of steroids to ease the coughing. But what they failed to do, and I had to figure out on my own, is that the major side effect of this steroid is insomnia. It's not like regular insomnia, I got 1 hour of sleep. I ended up going back to the ER the day after Christmas and told the Doctor, and he said "Yeah they absolutely should have told you that you won't sleep."

@jeannesf1 your story sounds a lot like mine. The biggest frustration is the way the pain seems to move around. I’m on Suboxone, switched from Hydromorphone and that switch has helped. Also went from 60-30 mg of Cymbalta. Would like to get off but have been through lots of stress with my brother dying so am in a very bad flare. I’m now trying Lyrica for nerve pain going from my neck to the finger types. My family dr feels it’s the best option. So much trial and error. I’m 75 and have had this most of my life…

@SusanEllen66

I was able to find a list and diagram of the trigger points you mentioned, and I said ouch to all. Thanks for that info. I also remembered that my first chiropractor had said many years ago that I have myofascial pain syndrome. I've had pain in my left shoulder off and on for 30 years. When I was living in GA, i found a really good chiropractor who worked wonders on that pain. Several years ago, it got really bad again, so I went to a place called "The Joint chiropractors" The next day after i went, my arm went numb from my elbow down to my hand, and was ice cold. I went to an urgent care, and the PA was stunned that she could see inflammation caused by whatever the so-called Chiropractor had done. I eventually went to my Orthopedist who did an MRI, and he said "Do not ever let a chiropractor near that shoulder ever again. I believe they can help people, but you are not one of them anymore." And just a few years later, i destroyed that shoulder in a fall. And despite 2 years of care and treatment, I somehow hurt it again last month. I was sitting in a doctor's waiting room, and when I got up to go with the Nurse, i had a really painful spasm. And while the pain isn't as bad as it was that day, it still hurts. I told my shoulder orthopedist to just remove the left side of my body and replace it with one that isn't a mess.

@coryl i watched documentary about Lady Gaga and her fibromyalgia years ago. In it she was getting massages at home, aromatherapy, etc but don’t remember if she was taking fibromyalgia meds. What stood out to me was when she said “I wish everyone with fibromyalgia could get the treatment that I get.”. Anyone by any chance know what that means? Is she cured or a lot better maybe with functional medicine treatments? It’s inhumane that insurance doesn’t provide what could help people with fibromyalgia. I was okay for a little while. Something works for me, then it doesn’t. I’ve been in a flare up for couple of weeks. I feel like I’m being tortured and punished. I’m so tired, mentally, physically and spiritually.

@SusanEllen66

Yes ma'am. Ouch every time