Could it be Fibromyalgia

@kjs831 just so you know, this Site is a no judgement zone.

Many of the people on this site have fibromyalgia. We have discussions about how we feel, and how it affects us.
There are so many different experiences because fibromyalgia feels different at different times, for different people.
I’ve had it forever (50 years). I get back spasms, and fatigue is always present. The worst part is when my ankles are held (when a doctor checks for fluid), when the inside of my knees are poked, etc. the pain is awful.
You can check for painful “trigger points” on your own. There are drawings online showing where the fibromyalgia trigger points are, check it out. It may give you an answer.
Did your PCP poke at you on certain points? If she did, I promise you would have said ouch. If she didn’t, she needs to. Try it yourself.

Regarding explaining to your parents, or educating anyone else, I think a 3rd party like a doctor would be helpful.
It’s a medical condition not something anyone would want to experience. You can show them the information on this site. It’s here to support anyone.

Keep us informed as to your progress, if you wish. We are here for you!

Susan

Hi. I’m hurting for you and actually hurting. It’s 5am and have slept for 1 hour. Both cause of insomnia and pain. My pain jumps around. Right now I have the interstitial cystitis pain bladder pain/urinary burning, 90% of the day but worse at night. Before that it was my back (chronic pain), before that hips, thighs and sides of thighs (painful to the touch and without touch constantly), which is a lot less then when first diagnosed. Yes the fatigue (I’m tired), makes me feel guilty no matter what I tell myself). When I was first diagnosed I had so much pain I couldn’t walk, open doors, shower ( felt like needles) and so much more. Doctors were baffled. They were thinking multiple sclerosis. I was diagnosed by a neurologist by process of elimination. If I wrote down all the illnesses, chronic issues I’ve had I could write a book. YET now I’m better. I’m not suggesting you may have fibromyalgia Everyone has different symtoms and levels of pain and different things work for different people. Heating pad, biofreeze, ibuprofen, chiropractor are my best friends, but only help sometimes. I’m taking LDN , which has helped (see information on this site about it) and that’s it. When I was diagnosed (over 14 years ago) was given amitriptiline worked but caused QT longation. So was given Cymbalta and gabapentin, ( up to 2000 mg daily) these meds work somewhat.
But if I had it to do over again I would not have taken them for so long. Got myself off them ( with doctors assistance but she is GP and now I know I should have not done it as rapidly as I was told I could) . Got off because of side effects, was doing better and wanted to take LDN instead. I’m still dealing with long term side effects it left behind after over a year being off. Trial and error. But there is relief. We are constantly trying and sharing new things on this site. It’s really helped me. Prayers for you. Love and peace.

Sorry. Just wanted to add. I found a testimonial on YouTube by someone explaining to family and friends what fibromyalgia is and feels like. There were many. I chose one that was sincere, informative, believable and as short as possible and sent it to close family members. Don’t tell them to watch it. Send it to them. I received good response. Mostly, “ I didn’t have any idea what you are going through”. It was a few years ago so I think I need to refresh their memories and send it again.

All the symptoms except loss of bladder control certainly sound like fibro. I guess if you are exhausted it’s possible to be so sound asleep that you could lose bladder control. I really hope you get answers soon. Fibro isn’t a great diagnosis but at least if that’s what it is you can start finding things to help and you won’t feel like you’re crazy. The problem is our pain and symptoms are invisible so others find it hard to understand what we are going through. Listen to your body and rest as much as you can and be kind to yourself.🤗😘

@jeannesf1

thank you for replying, I appreciate your kindness. I bought a big bottle of Tylenol and started taking them to help with the pain and aches. I've been on Amitriptylene for years because i have insomnia. Right now i feel achy and tired, and i just want to feel better.

It could also be Lymes disease. If you end up with that or fibro please ask your doctor for a prescription for low-dose naltrexone (LDN) which helped me tremendously with my fibromyalgia symptoms. If you search under this topic you will find lots of discussions about it. It's beneficial for many inflammatory diseases. You can find articles about it on-line as well. Here's one. https://www.verywellhealth.com/low-dose-naltrexone-ldn-for-fibromyalgia-cfs-716070

@coryl

I know that's the problem with a lot of mental and physical disabilities, if people can't see it, they don't believe you. I also have Autism and someone once said to me "Well you don't look Autistic." I'm sorry, What??" My mother is the type of person who knows everything even though she doesn't. She told me the exhaustion was because I don't eat right. Because I was too tired to bicker with her i said in my head only "Lady i haven't lived with you since the end of 2007. So unless we are eating together or I tell you what I ate, you don't have any idea what I eat." That's why i asked for help with how to tell family who don't believe anything is wrong with you. Thank you for replying.

@daisy17

I was just looking at the side effects, and joint pain and muscle cramps are listed as is insomnia. I'm a little wary about taking a drug whose side effects are the reason why I would need the meds in the first place. Thank you for replying, I appreciate it.

@SusanEllen66

Thank you so much, Susan. I'm going to take a look at those drawings on line for the Fibro trigger points. I have tremors in my left arm, which just started out of nowhere back in the late fall. I destroyed my left shoulder in a fall back in 2024. But everything is healed. I've always had pain back in that shoulder, it never fully goes away. So if i get poked in that area, I will definitely say ouch. The Neuro sent me for a DaT scan to look for traits of Parkinsons, but it came back fine. 4 day at home EEG, they saw the tremors I have while sleeping. But there was nothing going on in my brain that indicates seizures or Parkinsons. My knees have always hurt, because I don't walk for exercise. My Ortho NP said to walk to help out the pain, but the walking also causes pain. The biggest thing is the exhaustion, it's exactly like the exhaustion when you have the flu, as is the achyness. I'm definitely going to read other's posts so i can learn more.

@kjs831 it’s so hard for people who haven’t experienced what we do to understand. A diagnosis of fibromyalgia at least gives one justification and some people like Lady Gaga are speaking out and affirming the pain and fatigue. Try to be understanding while knowing you are right and they are ignorant or unwittingly believe our suffering. Take it one day at a time!🤗