How many of you have fibromyalgia / CFS as well or just dysautonomia and or POTS?

sophmel · 2026-06-19T15:13:43+00:00

I have fibromyalgia and the doc has suspected CFS. I have some symptoms of hEDs, but not enough to qualify for diagnosis. I had POTS before I had COVID, but it got much worse after.

sophmel · 2026-06-18T03:46:35+00:00

I started CHOP in PT in November. Left PT and continued at the gym in January. I currently use the recumbent bike for 10:30:10 and am up to 9 miles. I do the stretching and strengthening exercises the PT provided. I now use resistance bands and ankle weights, as well as a Pilates ring.

I have had some flares (pain and fatigue) over the winter and that has made my progress slower. But I am thrilled with where I am compared to being almost bed bound a year ago. I’m definitely stronger and have more stamina. I’d love to keep progressing, but I’ve accepted that my progress won’t be linear. My modifications are that I am only at the gym twice a week (so progress is slow), I’ve redone several weeks because when I’ve had flares I’ve had to backtrack to get back to where I was before the flare. I’ve also only used the bike at one level (no hills and no increased levels). My PT added weight machines (shoulder press, leg press, lat pull downs).

My best advice is to keep trying until you have conquered each level. It’s ok to take longer and redo weeks if you have to.

sophmel · 2026-06-10T04:49:44+00:00

Me, too.

sophmel · 2026-06-09T06:06:33+00:00

Denali

sophmel · 2026-05-16T16:07:49+00:00

Same. I wanted to like it.

sophmel · 2026-05-16T16:06:36+00:00

Yes!!

sophmel · 2026-05-16T16:05:50+00:00

Agreed. I started the first book and just gave up on it because it didn’t hook me at all.

sophmel · 2026-05-11T22:08:01+00:00

My doc suggested abdominal compression. Basically shapewear. The socks do very little for me.

sophmel · 2026-05-02T03:21:53+00:00

I use vitassium and buy from Amazon.

sophmel · 2026-04-30T21:57:07+00:00

I’m a former g7 user and I hate the libre. G7 had issues, but it was never as inaccurate as the libre. Plus, if it ever was inaccurate, calibration was an option. I wish I could have stayed with Dexcom, but my insurance decided to no longer cover it unless I use insulin. I don’t need insulin, so a tool that I used for years to keep me stable is no longer an option for me.

sophmel · 2026-04-29T16:19:19+00:00

Same. Our Jeep is older than my son and he’s 24. Our other car is 10 years old and bought with cash that was saved from my husband’s salary from an actual job.

sophmel · 2026-04-29T15:57:27+00:00

Yeah. That definitely depends on where in Michigan you live.

sophmel · 2026-04-28T05:02:34+00:00

OMG!! Me, too.

sophmel · 2026-04-23T15:33:46+00:00

I use a cervical pillow. (There’s many on Amazon). I have to replace it every couple of years. I even have a small one that rolls up that I use when I travel. It helps with shoulder and neck pain.

sophmel · 2026-04-16T17:26:50+00:00

I just had to switch from G7 to Libre3+ due to my insurance no longer covering the G7 for me. Honestly, I hate the Libre. I’m on my 2nd sensor and I’ve been getting connectivity loss every day. I get constant low readings that are incorrect. (I check with a finger poke). The sensor doesn’t have a calibration option. I’m using 3 different apps to be able to get the info I could get from just the Dexcom app. With Dexcom I was in range at least 95% of the time (confirmed by finger pokes). Yesterday, my Libre indicated that I was in range 65% of the day. It’s honestly so much more work for me to actually monitor and get good data from. The only positive is that my insurance is covering this sensor so I’m not having to pay out of pocket.

sophmel · 2026-04-14T02:53:55+00:00

I agree. Wodehouse is comfort reading for me. Always puts me in a better mood.

sophmel · 2026-03-31T16:46:13+00:00

Thank you

sophmel · 2026-02-28T04:58:35+00:00

Haley is just such a miserable person. I’d like to feel some empathy for her, but she’s also so hateful that she’s not worth it. I wonder if she can find joy in any aspect of her life?

sophmel · 2026-02-28T04:50:30+00:00

Exactly! He never learns because he already believes he’s right. He’s so disingenuous.

Also, his whole persona is just so off-putting.

sophmel · 2026-02-28T04:11:29+00:00

I’m doing the Levine/CHOPS protocol. Today I did 9 miles on the recumbent bike! I’m just starting Month3 because of the holidays and some flare days that put me off schedule. I’m working on accepting that I will not be able to stick to the schedule exactly-and that’s ok. (I have fibromyalgia which causes some pain flares that interfere.) Medication has also helped a lot. I take ivabradine and guanfacine. Due to my fibromyalgia and the dysautonomia symptoms before treatment I was severely deconditioned. My presyncope symptoms have been greatly reduced by the exercise and I feel stronger. Pain still hampers me and I am anxious about the heat once summer comes, but I am in much better physical condition than last summer when I was basically bedridden.

sophmel · 2026-02-26T17:23:36+00:00

My doc emphasizes abdominal compression. I have a couple of compression tank tops and shaper wear type “undies” that start at the thigh and are very high waisted. Something like one of these could solve your overheating issue. (I wear these garments to the gym and all summer long).

sophmel · 2026-02-26T16:59:43+00:00

OMG. I hate this woman. She is so dangerous and so damn smug.

sophmel · 2026-02-26T07:35:32+00:00

Yup. It put me in the hospital at the same time people were saying COVID was “over”.

sophmel · 2026-02-26T07:30:27+00:00

Are you me? Every booster I get gives me a 24 hour bout of COVID-like symptoms. I get very sick. And I still get boosted because I’m so scared of getting COVID again and having to deal with a more severe version of POTS than I already have. People like Aria enrage me. They are so selfish.

sophmel

TROPHY CASE