Living with Fibromyalgia: Introduce yourself & meet others

@crewsr Im hapee 4 U!

@quilterfingers Oo! Im soorree. Pleeze dont feel guilty! Feel brave, that iz wat ur dauhter needz rite now & 4evor! She needz U 2 b strong so she kan b strong 2. So U 2 put on thoz boxen glovez & let her no tha she iz not alon & tha U & We R here 2 help her fite & we R all fiterz!

@kimmee

I know U R right. thank you for your encouragement.

Thank you for sharing. I am going to ask my doctor about that. The Ketamine infusions.
Diana

I'm a 78 y/o retired R.N. I've had fibromyalgia since my 30s (dx. with 14/18 tender points), and for some reason, the pain seems to be getting worse and harder to manage with all my other chronic pain issues. I have T2 Diabetes (controlled), CHF, a pacemaker, mild CAD, obstructive sleep apnea, hypertension (controlled), cervical (neck) stenosis, moderate to severe L/S spondylosis, moderate to severe osteoarthritis s/p R TKA, and moderate to severe osteoarthritis bil. wrists, severe dry eye syndrome, and morbid obesity (recent 60-pound weight loss). Now having moderate to severe pain in the left shoulder radiating down the left arm, including the elbow, and mild to moderate pain in the right shoulder also radiating down the right arm, including the elbow. I'm seeing ortho next month to r/o rotator cuff issues. I recently read that vitamin D3 with recommended additions may help with fibromyalgia pain, and I need dosing and frequency info. I'm also considering starting low-dose magnesium glycinate to help with muscle relaxation and sleep. Any new or currently effective treatment for fibromyalgia would be greatly appreciated.

Has anyone been diagnosed for the first time at age 81 or near that? I'm having a hard time believing my diagnosis .My symptoms match up to polymalgia but I don't have the blood markers so drs say fibromyalgia.

@bren2023 I am going to add my 2 cents.

Neither is curable, and I would rather have fibromyalgia than PMR.

@SusanEllen66 I don't think that you would like to have FM. I have had it for over 40 years and gets worse every year . It sounds very similar to PMR.

Hi my name is Jen, I turn 50 this august and I was diagnosed at Mayo in MN this past March after 12 years of suffering. Might have been longer...
I cannot express how much it means to have a diagnoses and a plan of action.
Long story short..
I was a VERY active horse woman. I ran a boarding training farm of 30 horses in Northern Illinois and did all the chores myself, cleaning 20 stalls and feeding/watering, stacking hay, mowing, and riding and teaching lessons.
All the sudden I started getting exhausted, taking afternoon naps just to make it thru the day and started gaining weight. I was 155lbs and I'm 210 now. My joints were killing me, I was popping ibuprofen like candy. I had pin and needles in my hands and feet, then I had carpal tunnel surgery as well.
Tests.. so many tests.. I was told its estrogen and then pogestrone... then it might be early menopause and they put me on birth control pills ( i had a tubal long ago) and antidepressants. Random blood tests would pull up Low iron.. and they blammed that. Get my iron good and Vit D dropped.. fixed that, still issues.
I was checked for lupus, hasmintos, sickle cell, lyme disease, hypothyroid tests were not low enough to warrant meds. I've had Covid 4 times, first time lasted 6weeks and they wanted me in the hospital but I would not go. I got vaccinated after that and next three times I had covid were mild and basically every year same time.

I ended up selling my farm (and dream) and moving to be closer to family because I could not handle the physical labor. I quit riding completely and just slept all the time.

New doctors in South Dakota ran me thru the same ringers, same tests, over and over. I needed to lose weight, planned meals, exercise programs were not cutting it. They started me on Ozempic thinking that would help, couldn't handle the side effects and stopped after 6 weeks and a paralized stomach. Shortley after that mess... I ended up having what I thought was a heart attack and 14k in heart tests later, it was my gallbladder. Took that out. Then my toes starting turning purple for no reason and I have Raynard disease. Still exhasted, still no answers.
Endocrinologist put my on Armour, then later Levyothyrine just to try to help... didn't help. Iron went low again, 5 infusions later and a abalation and upper/lower scopes tests and now I have a iron blood anemia disorder to watch closely and they don't know where its going.. lol

I finally gave up and went to Mayo.

Saw Dr Chris Aakre at Mayo Mn, diagnosed me fibromyalgia immediately. I hit all the points on the test. Sent me to sleep clinic, where I was not obstructive apnea but hypersomnia and now use cpap at night. Saw Hemology and got a plan of action for my iron tests and infusions. Tried to get into Pain Clinic, sat there all day.. but couldn't get an appt.
I did not want to go antidepressants again, so Dr Chris put me on LDN 4.5mg and Tonmya at night.
The pain is gone, the buzzy feeling/ vibration in my body has stopped most of the time. My ears still ring, but not as loud. My eyes are still blurry, I'll have to go back to dr to have them looked at again. I'm only been on LDN for 2 mos.
Am I still tired.. yes.. but I haven't needed naps except on days I overdo it.. so that's a given.
I got a Visible bracelet to monitor my exersion.. so I have fewer flares/crashes. I've had one crash in two months and that was in the very beginning at like my LDN 1.5 mg dose. Last week I flew to Florida for a wedding and flew back 24 hrs later.. 4 flights total... no crash so far. (came home last friday) I know I overdid it on that trip... but I feel good.
Things are getting better and I hope you all find your way too. There is no miracle drug.. but so far this is working for me. Now to get back to working out and hopefully riding again soon!

@1kay2
I have had fibromyalgia for many, many years.

The polyneuropathy I developed 10 years ago is worse. I had a very rare type of Vasculitis that damaged my nerves.

Now I have Functional Neurological Disorder FND. It’s made my life very difficult.

My friend has PMR. I understand it slightly.

I am almost 77, and have been through a lot. My body is a curse and a blessing.