Spoonies and Chronic Pain support thread

Hey 😊

I have a variety of awesome things like chronic pain and inflammation, central sensitisation, a mast cell disorder, and PTSD.

My focus is getting control of my body again - learning to love it again after many years of not particularly. And I reckon any weight loss will be a welcome side effect! 😀

I have had times of needing to walk with a cane, lovely, so I really know what that’s like. It’s very hard. Very very hard... especially when you’re young and by all accounts don’t necessarily look like you need a cane. I’m pleased you’ve got a good doctor who can support you in finding how best to take care of yourself and make some differences to your current physical limitations (which I know are mentally and emotionally exhausting, too).

I’m super happy to be a support for you here however I can, if that’s helpful for you 😊

I'm late to the party... you three still around?

Fibromyalgia, Endometriosis, Osteoarthritis and under-active thyroid to name a few 🤦🏻‍♀️ Been signed off work for exhaustion but determined to get my body to like me again. Add me if you wish. Linsey from Suffolk, England xxx

Yep! Endometriosis here.

Hi looking for new friends to support me and for me to support back. I am Autistic.
I have started fresh this month, been horrible start of year for my health being diagnosed with secondary polycythemia (raised blood count) cannot find the cause back in January, February my immune just seemed to hit rock bottom and caught double flue, migraines, nosebleeds etc, I had enough , Lisa my lovely and awesome personal trainor helped me fight my way back from March, went back to work April was there 4 months until my back pain hit all time high, 2 mri scans taken, 2 hospital consultants in difference of opinion one says tumour other a cyst , but as it's so small and they feel as I am still walking around and its not causing life changing problems they are not removing it. They think it's my pinched nerves in my L2 and L5, slight disc out and ware and tare in my lower back causing the pain which has resulted to be admitted into hospital twice as I collapsed once and the other time it was so bad I was unable to move out of bed and the pain was hell, but the still are not going to help me. Awaiting to see the pain clinic. Determined now to fight again to get stronger even with the pain.

Recently diagnosed with chronic pain/fibromyalgia. Suffered with hip problems/used crutches since age 11, diax osteoarthritis in both hips at 18. Had one replaced at 24. Bedbound April-Aug and I piled weight on, now up and able to walk to toilet but constantly exhausted. Trying to make a conscious effort to lose some weight and potentially be able to move around more freely xx

When I was 13/14 I got sick and never got better. Mono is suspected, but I tested positive for it a year later so they aren’t 100% sure. They say whatever the virus was it attacked my neurological and immune systems. Diagnosed with fibromyalgia, CFS, auto immune thyroid, asthma, ADD (sucks going from a near photographic memory to not being able to comprehend a paragraph), and numerous other things (a host of GI issues from all the ibuprofen) late in my teens. Was being tested for MS (textbook symptoms) only to find it was gluten ataxia! So I have been GF for 7.5 years.

At 33/34 (last year) I had a host of issues come up, many likely brewing for years but I ignored the symptoms thinking it was just my glitchy body flaring up. Was likely less than a year from colon cancer (one the annual plan for colonoscopies- joy), and ended up having a total hysterectomy and one oophorectomy due to endometriosis, adenomyosis, uterine polyps, and a mass buried deep in my right ovary.

Diet changes help me a LOT. Dairy, grains, and sugar are not my friends... I tried cutting them out completely but it is hard to stick to when feeding a family of six or going out so I limit myself to small amounts (still GF though).

I decided enough was enough and I wasn’t going to sit back and rot away. I have too many more years left in life! If it’s a hard day I do Classical Stretch by Miranda Esmonde White (or just rest), other days I will push myself. I have poor temperature control, hot makes me sick, extreme cold with trigger a fibro flare than can knock me out for weeks (I learned that trying to be tough and run in 35 degree rain last year).

Thankfully I have always been able to stay mostly functional, I will have spells of not being able to get out of bed until 10 or 11 and then moving straight to the couch until later in the day (we are a homeschool family), but those are thankfully rare.

Miss_Snow_White wrote: »

I have chronic back pain . It was from an injury that occurred when I was 13. Last year at 31 had surgery just so I walk without sciatic pain. since then I still have pain, just a new kind now and chronic inflammation at the surgery site. I can't even sit up most mornings without wanting to cry.

consider second opinion, make sure no foreign bodies left in surgical site, maybe a local steroid injection is justified?

My name is Sheryl V. I have (from head to toe) MDD, OCD, PTSD, chronic headaches, deteriorating eyesight, chronic ear infections, some hearing loss, chronic sinusitis, chronic sore throats, hypothyroidism, degenerative discs in my neck and back, permanent nerve damage in my arms, fibroadenoma cystitis, asthma, chronic bronchitis, Gerd, IBS, PCOS, deteriorating joints, permanent nerve damage in two toes and to top all that fun stuff off... CFS, Fibromyalgia and two types of arthritis I know of so far. And... I have test results that back up all those diagnoses from doctors to prove it. Some ignorant fool once accused me of being a hypochondriac too. I laughed and said, "I wish. That would be easier to fix." Anyway, those are just some of the things I'm dealing with. I left out a few things. I still have my sense of humor though and that's what matters most.
If you're interested and it's okay if you're not... I'd love to have you all join me in a support group for MFP/Fitbit users dealing with chronic illnesses/injuries, that are using MFP/Fitbit in order to be able to get to a point where they can feel better. It's available on Facebook and in the Fitbit app. It's called Fitbit to healing on both but you don't need to have a Fitbit to join. If you're interested, check with me and I'll send you the link. Either way, please know you are not alone. There are many of us out there dealing with the same sorts of things. Hang in there and keep on going.

My names Danielle. I have Diabetes, Graves Disease (autoimmune), TMJ (Causes intense face pain) and a form of alopecia. Definitely looking to connect with others with Chronic Pain or illness. It can be so isolating but it doesn't have to be.

Bless your hearts. Hang in there and don't give up. One day at a time.

Feel free to friend me on MFP, Fitbit or Facebook and we can encourage each other.
https://www.fitbit.com/user/7HQ3ZC

Danibrss wrote: »

Anyone here with chronic pain? I'd love to get a support thread going.

About me: I have a herniated disc, fibromyalgia, inflammation, GI issues, etc. This all started claiming my body around 27, but the last year has been the absolute hardest. I wasn't even 30 yet and walking with a cane. I have a great doctor now, and we're getting there, but my quality of life still isn't what it should be at 30.

My goal is different than most on here. I don't care how many pounds I lose per week or if I miss tracking a meal. I just want to feel alive again and capable of moving and doing the things I enjoy.

We are limited in what we can do, but we CAN do things and that's what I want to think about, because thinking about what I can't do is depressing.

I would love to meet fellow spoonies or anyone recovering from injury.

@Danibrss I was diagnosed with autoimmune Psoriatic Arthritis in 2014 and I am now stronger than ever! I take 40mg of Humira every two weeks. The 9 months of Prednisone and Methotrexate gave me Type 2 Diabetes and I take synthroid for Hypothyroidism.

Feel free to add me warrior!

Cheers!
Donnie