Could it be Fibromyalgia

@coryl

You would think in this day and age we would live in a society that understands that there are a lot of physical and mental health illnesses we cannot always see. I have a friend who has Fibromyalgia among many other illnesses you cannot see. I told her I don't know how she does it and I have a new level of sympathy for her.

https://www.fibromyalgiafund.org/why-fibromyalgia-muscles-hurt/
Check this research out. I found it very descriptive. Essentially, though, it goes back to square one when I was diagnosed 45 years ago. My meds then were low-dose Elavil (I took the generic) for stage 4 deep sleep, Naprosyn (anti-inflammatory), Parafon Forte (muscle relaxer, I take the generic).

Now that I’m 77, I can no longer take Elavil (hallucinated after 5 years) - use C-Pap machine that doesn’t make me feel rested; can’t take Naprosyn or anti-inflammatory drugs - had internal bleeding a few years ago; still take Parafon Forte - can take this muscle relaxer for a couple days at a time - split 500 mg dose in half…puts me to sleep, makes me groggy, take on as-needed basis only.

Always tired, more muscle tightness - have had two UTIs - each one, muscles in area of uti clenched and wouldn’t loosen up for months. First UTI it was my left hip. Second UTI, it was my left flank.

@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.

@kjs831 Yes, those are side effects, but as this article explains very few people experience them, "Naltrexone side effects low dose are typically mild and infrequent, affecting fewer than 8% of patients. Most people tolerate this medication well, but understanding what to expect helps you start treatment with confidence."
https://www.directintegrativecare.com/post/naltrexone-side-effects-low-dose
Regarding insomnia, as the article says, most sleep problems with LDN resolve in a couple weeks. In fact, LDN is often used to treat insomnia. https://neurolaunch.com/low-dose-naltrexone-sleep/

The other drugs typically prescribed for fibromyalgia (Cymbalta, Lyrica, Savella) are often addicting and can have severe side effects and only work for about 30% of the people who take them.

I only offer this as an option to check out because it basically cured my fibromyalgia and insomnia. I feel like it "re-set" my body back to where it was before getting fibro For me, it was a miracle.

It doesn't work immediately, as you have to start at a low dose and taper up to the maintenance dose, usually 4.5mg/day. After that it can take a couple months to begin to notice improvement. The only side effect I've noticed is vivid dreams, but not nightmares.

@kjs831 the fibromyalgia pain test is on certain points not the entire knee or arm.
Your tremors. Are they fast or slow?
If you watch a person on video who has Parkinson’s their tremors are slow.

@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…

@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?

@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.

@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.

I took it that she had one on one treatment whenever she wanted. At one point she was getting a massage while getting her makeup done. I don’t have the money or energy to get a massage anytime. She had access to healthy food and supplements with other people doing the cooking. I imagine she could do what she loved and then take the time to recover. Few of us have that freedom.