Spooning into summer - life with chronic pain & fatigue.

[Grockle]

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

theory here www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Hello everyone. I can't remember whether I joined this thread earlier in the year, or just read it. I may just have lurked, because back then I was being fobbed-off, fighting to be listened to, and feeling like a hyperchondriac. :( Since July, I have had a formal diagnosis of hypermobility syndrome and x-ray confirmation of arthritis in several joints, including (but not only) 'severe' arthritis in my R hip and 'moderate to severe' arthritis in my R knee, along with a dislocated patella. :(

On the bright side, at least I now know why I am struggling and can't walk without pain any more. :( But I am also angry about having had to struggle so long and so hard to be listened to: I spoke to 2 docs and several physios about my joint pain, and basically they suggested exercise and anti-depressants. Now I have changed GPs, and within a week of seeing a new doc have a re-referral to rheumatology and a new referral to an orthopaedic surgeon.

I am so tired, and soooooo tired of being tired and in pain. It has been over a year now. I haven't had a single day off sick, but I work part-time, and mostly spend my days off recovering from my work days. My quality of life has plummeted in the last year or two, and I'm not self-managing very well - I guess at least partly because I haven't had any real information or support until very recently.

Sorry, this is a real moan, isn't it? I'm naturally a positive person but I am quite down ATM. Does anyone have any 'top tips' for staying cheerful and boosting your mood, when you're struggling with chronic pain and fatigue?

Hi flow, I don't think I have any tips other than to smile and have lowery expectations of yourself. I'm seeing a health psychologist to help come to terms with being chronically ill. It's certainly made me think.

Lisa, have they ruled out lupus now?

I finished work today for 2 weeks, thank goodness. Much stress though. Spoons to you all x

Thanks Grockle. I saw a health trainer who said pretty much the same thing: her exact words were "Don't be so hard on yourself. Be kind to yourself". I do find myself very impatient and cross with myself about how little I can do. I have managed just 50 mins of Christmas shopping so far, for example. :( How did you find the health psychologist? Sounds interesting and useful.

P.S. I'm off work now too. It's such a relief! :)

Don't Hoover?!
Seriously though lisa, you have my sympathy. I have backache at the moment too. I thought my back was my friend - I have had pain just about everywhere else but not there, until recently - but I guess it sort if holds everything together, and will feel the strain eventually.
I'm now looking at tai chi and Pilates classes, to see if I can find a one that's held on a day I don't work...

Back pain...

Chiropractor (to help with core stability & other issues that may aggravate it)
Heated electric underblanket (the best thing for me)
Hot water bottles/ Heat pads
Hot bath
Massage therapy
In desperation Gabapentin/ codiene/ amitriptyline but they generally dont work well for me

Some people use TENs

Oh Lisa, that is frustrating. I suppose the advantage of being a lone parent is that you don't have anyone to be annoyed at

Merry Christmas to all of you... wishing you peace and spoons.

Wishing you all a very Merry Christmas, hoping for a happy and healthy one for everyone.

Lisa, it took a friend of mine years to get her lupus diagnosis, even as a nurse, because they were set on her illness being AS

Anyway, merry christmas everyone, hope father christmas gave you all lots of spoons! If not, bugger it for today and get on the

www.dailymail.co.uk/health/article-2522091/Ive-got-bones-100-year-old-Ive-bed-seven-YEARS-22-year-old-severe-ME-break-bone-just-sitting-fast.html

Wishing you all a happy, healthy spoon-filled new year x

We've gone quiet in here. How is everyone?

Hello all,

I am suffering very bad hip and lower back pain. I can't sleep. I have two dcs, one of which co sleeps 18 mths. Dh sleeps with 4 yr old.
Diagnosed with disc last year but new symptoms since then. As soon as original back pain eased got trapped ulnar nerves! Constant numb tingly right leg. But the last week it has been sacro Ileac that's unbearable. Naproxen, codene, aracetemol, hot bath, osteopath, gel... Still waiting for sleep.
Baby wakes often still bf and I work too. Feel at breaking point. Gp won't send me for another scan. Osteopath thinks another disc and twisted pelvis. What to do?

I'm a mess. I feel like I'm on the verge off a breakdown or something. I am dreading work - I feel sick & anxious when I usually look forward to going back.

I have crippling fatigue but cannot afford more time off sick. I'll lose ny job. Then what? Lone parent with no support and a mortgage to pay. Very scared. Which is probably contributing to the awful insomnia & heavy legs I have. Wtf do I do?

Ginga, I'm in the middle of having accupuncture for sacroilliac pain, seems to be working so might be worth a try? Sympathy for the cosleeping, my two are technically in their own beds now, but still both appear during the night, and while its lovely having them to snuggle, the space issues kill my back!

Grockle :( ((gentle hugs)) dont know what to suggest for you love. Are you sleeping okay?

Thank you. I have terrible insomnia... 3-4 hours a night. It's a perennial problem & comes and goes but I've suffered with it for years. I just wish I could sleep properly most of the time. Doesn't help that DS (8!) keeps waking me up, either by screaming with nightmares or by appearing in my bed. I'm too tired to fight with him about it.

Sorry for being miserable. Hope everyone else is doing better.

I have a slipped disc, sciatica & a twisted pelvis. My chiropractor was great - have you tried that?

ME/CFS people, the website for this years London conference is up, but no details of the talks yet.

5th Feb there is a meeting in Bristol.

Grockle,

Sorry you are so low. Have you tried amytriptiline for your nerve pain? It's good for insomnia, too.

Is there any chance of medical retirement if you just can't work? Is there any plan
Can you can get advice on everything you'd be entitled to if you can't work? It's been a nightmare for me as nobody actually tells you anything. I now think I will hopefully get PIP and if I ever get my medical, possibly ESA, too. If and when my pension is ever agreed, I could, theoretically end up not too much worse off than when working part time.

Maybe CAB could help?

Sorry, you have probably thought of all this.

Thanks guys. I have been to osteopath who says twisted pelvis. Is chiropractor better? Grackle I also have slipped disc and sciatica too. I heard steroid injection might help? I am starting to feel quite depressed about it. I have to find a way through I am the bread winner. It's been the worst week and I am due back to work on Tuesday but I won't function n codeine that I am taking. Would like to try amitryptylinebu scared I will be too zonked while keeping with baby?