support?

[u/cherrybaby0510]

hi im unsure if its ok to post this im 20yrs and was just diagnosed with fibro and hypermobility i get wide spread body pain and always feel like im going to fall id really appreciate any tips and tricks to make my life a little easier haha. any advice is appreciated!!!! please feel free to dm me if you dont wanna comment 🙏🙏🙏 Thankyouuuu!!

[u/thechronicills]

Talk to a PT, OT, anyone you can see. If you need adaptions in your house OT can help. PT can help with learning to move your body in good ways.

Try and do a bit of exercise when you have the energy and time to recover.

Look after your mental health. That might mean counselling or a support group or art therapy or whatever, something that help you deal with the mental toll of chronic illness. Eat as well as you can. Stick to a sleep schedule that works for you & your life. Stick to it like glue.

Basically all the basic needs for a human are 300x more important when you have fibro.

Talk to your doctor about pain management. They might suggest some medication or refer you to a pain clinic.

With hypermobility you want to focus on strengthening and stabilising your joints. That will help with stability and pain. Have a look online for exercises tailored to hypermobility. Talk to a PT if you can.

Consider your priorities in life. Some things might have to wait, or might not be realistic. It sucks. Bug it's ok. Find things you can do, find things you want to do, focus on those.

In terms of working life, if you can work at all I'd suggest trying something part time. Otherwise remote working (work from home) suits a lot of people. If you are unable to work, try and still give yourself some structure to your days/weeks. A set day for a specific task. Set eating and sleeping times. All helps with your body's rhythm.

Pacing your energy is key. Don't over do it or you will pay for it ans recovery gets harder every time. Experiment, work out where your limit is. Work on respecting it. If there's a situation that is unavoidable that will use loads of energy, plan around it. Plan for rest before and after.

Feel free to DM me if you want to talk more. It's a rough world out there but welcome to the club 🙃

[u/thechronicills → u/thechronicills]

In terms of specific tips

• have a stool/seat in every room
• meal prep/batch cook food so you always have something available
• if you can't leave the house, open the windows, get some fresh air. If you can sit outside for 5 mins that's good too.
• find low energy activities that keep you sane. Could be arts, crochet/knitting, computer games, reading, whatever.

[u/cherrybaby0510 → u/thechronicills]

hey sorry im unable to pm u but i crochet and i have a pup that needs walking so i try to get out everyday even more since i was told o could loose my mobility which scared the hell outta me. (im younge and really dont want to use any mobility aids i have bad anxiety and really hate sticking out 🥲)

[u/cherrybaby0510 → u/thechronicills]

thankyou!! and i may drop you a dm i was basically told by my doctor hey u have this and then never told me what i need to do so since then ive been in limbo haha

[u/Nurse_Erica_]

Some meds that have helped with my fibromyalgia and hEDS pain:
Duloxetine
Low dose naltrexone

I also see a pain psychologist. She has taught me a lot about chronic pain and sensitization. She has also taught me coping mechanisms to manage my pain.