Spoonies and Chronic Pain support thread

Danibrss
Danibrss Posts: 8 Member
in Motivation and Support
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.

Replies

  • asthisravenflies
    asthisravenflies Posts: 3 Member
    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 😊
  • coppertop_4
    coppertop_4 Posts: 258 Member
    I'm late to the party... you three still around?
  • Devil_Dawg
    Devil_Dawg Posts: 167 Member
    Dito herniated disc, bulging disc in neck and back, plantafisitis and now left knee inflammation. However, I won't stop running/jogging and partaking in ongoing sports etc., Basketball... Feel free to add me for mutual 😀support
  • linsey0312
    linsey0312 Posts: 5 Member
    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
  • corinasue1143
    corinasue1143 Posts: 7,464 Member
    Fibromyalgia, Cvs, oa. What are you doing that helps?
  • MaintainInTheMembrane
    MaintainInTheMembrane Posts: 63 Member
    Yep! Endometriosis here.
  • stacyprater18
    stacyprater18 Posts: 2 Member
    Another spoonie here, I have lupus, fibro, and a number of other auto-immune diseases.. I have alot of weight to lose, so I am trying to log daily and see if that will help.. I know it is going to take me a long time to lose the weight, with all the meds I am on and not being able to work out as much but at this moment I have motivation and really really need to lose weight.. So any ideas or help would be great.. Thanks so much
  • Spunkylol
    Spunkylol Posts: 2 Member
    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.

  • mbaker566
    mbaker566 Posts: 11,233 Member
    fibro and behcets and now some lingering pain from some dog bites

    staying active seems to help me the most on days when moving is possible
  • wapitona88
    wapitona88 Posts: 2 Member
    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
  • corinasue1143
    corinasue1143 Posts: 7,464 Member
    I find the things that help me most are vitamin d and magnesium.
    As far as exercise, I choose to wear a pedometer and keep my steps consistent. I don’t have great energy days, but it keeps away the really down days.
    I have worked on improving my sleep for years. It has helped a lot.
    What do you do?
  • moonangel12
    moonangel12 Posts: 971 Member
    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
    Miss_Snow_White Posts: 64 Member
    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.
  • LAT1963
    LAT1963 Posts: 1,375 Member
    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?
  • vesseyfamily
    vesseyfamily Posts: 19 Member
    What's a "Spoonie"?
  • vesseyfamily
    vesseyfamily Posts: 19 Member
    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.
  • Iamfocusingonme
    Iamfocusingonme Posts: 15 Member
    What do you guys do when you can barely function? I WANT to do more but im just SO tired and weak. I WANT to eat better but it takes more effort to find and cook healthy food than a just pop tart cold. You know what i mean?
  • daniellelouiselions
    daniellelouiselions Posts: 1 Member
    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.
  • IAmTheGlue
    IAmTheGlue Posts: 701 Member
    Hello people! I have read every single one of your posts and I may have found my weight loss tribe! I'm going to send each of you a friend request. Should anyone else read this, you can feel free to add me.

    Anyway, I'm a 43 yr old wife and mother of 5 (19-2yrs old) who all need me healthy. I also struggle with fatigue. My immune system is insane and as a result, I have 2 rare autoimmune liver diseases (PBC /PSV overlap syndrome) which we moved across the country so I could receive better health care at the Mayo Clinic. I also have Sjorgen's and have had Endometriosis forever.

    I'm especially tired right now as a combination of the Prednisone for life and Sjorgen's had destroyed my teeth. So, Im recovering from my 2nd dental surgery in the past month Everything is fixed at the moment, thankfully, so at least I don't have to get any more work done. It's been 9 days since the second one but I'm beat down. Right now I'm struggling to get enough calories as swallowing is a pain. Fortunately, I have plenty to give!
  • vesseyfamily
    vesseyfamily Posts: 19 Member
    Bless your hearts. Hang in there and don't give up. One day at a time.
  • reflectionofme
    reflectionofme Posts: 310 Member
    Me too. Fibromyalgia, Sarcoidosis, Psoriasis, Raynaud's Syndrome and PCOS. Currently going through more tests.
  • vesseyfamily
    vesseyfamily Posts: 19 Member
    Feel free to friend me on MFP, Fitbit or Facebook and we can encourage each other.
    https://www.fitbit.com/user/7HQ3ZC
  • jonezy444
    jonezy444 Posts: 14 Member
    Hello all! Osteospinal arthritis, herniated discs, endometriosis and depression here! Let’s ride this struggle bus together 😂😂
  • jasamjak67
    jasamjak67 Posts: 1,421 Member
    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
  • mrdvswolf
    mrdvswolf Posts: 3 Member
    For me it's chronic lower back and leg pain from an auto accident about 2yrs ago. A simple walk around the neighborhood will cause things to light up like a bad lighting storm. Through physical therapy, I've found some exercises I can do that don't aggravate the problem. I'll push the boundaries and try other exercises every now and then to see if I can do more. While it's been slow going, as far as the progress I'd like to see, I feel better by doing what I can vs. just sitting/laying around.

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