Spoonies... friendly support for anyone 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.

Spoon Theory Here

Old thread

Thanks misc - I just want to know what they can offer & how it might impact DS. Hope your move went well. I sympathise - I hate watching people do things that I know makes things harder for me. I'm a bit like you - I don't realise how much pain I'm in until I stop & sit down.

I'm like beyond with assessing my pain too.

I THINK I maay have TMJ now too.

I find I forget where pain is, so when a dr/physio asks I can only be very vague and only remember the aches pains that are very troublesome at that moment- rather than pinpointing what keeps me awake every night. Weird isn't it? I am kind of so used to some that they are part of me. Ds has ASD and we tell from his behaviour if he is in pain, he is pretty poor at pinpointing it himself.

I hate appointments.

I have ongoing issues with a painful hip. I've posted on the other spoonies thread about it, I think.

In a nutshell....
Complained of painful hip to GP - It will get better.

Returned: xray and blood tests.

Phoned for results - they couldn't find them.

Then they found them and they were 'fine'.

Then they called to tell me to see a Dr about them. Dr said nothing wrong with hip, but spondilitis on spine. (So that's why I also had a bad back!)
Returned again as pain not going away. Referred for physio,.
Saw lovely physio lady. Made some aches disappear, made the proper hip pain worse
Sent to the hospital. They referred me back for physio.

Physio was a nice (and good looking) chap. :) Exercises more focussed, but still aggravated hip pain. He referred me to a consultant.

Seeing the consultant and he asks for a history of my pain. I find myself taking a deep breath and trying to remember where to start.

Oh, and that was after I laughed when they asked was I otherwise well and I answered 'yes, fine' by habit, before having to explain that the laugh was at myself as I was not indeed fine, but was being diagnosed with my TN at the time and juggling different medications.

I say hurrah for modern medication, but half of the time I had off work was because of the TN pain, but the other half was the gp trying to get me on a medication that tackled my pain, but didn't make me poorly with the side effects.

(PS - hip consultant took one look at the original, three year old, hip xray and diagnosed my problem. Absolutely steaming that I went through years of problems when my GP should probably have picked up the problem in the first place)

See this is what i hate about gps says the woman whos hoping long term to train as one! sometimes you do just need to see an expert, but the gatekeeper says no

I know. Thankfully, with my TN, the GP immediately made a neurologist referral.

Very annoyingly, when the orthopaedic consultant pointed out the problem on the xray (which is v embarrassing when looking at a pelvic xray as you can see all the soft tissue bits too as shadows on the film ) I could see it too. There's clearly a difference to the roundness and thickness of the bone in the ball of one of my hip joints. So why couldn't whoever looked at them 3 years ago?

The ortho consultant was very surprised that it had taken 3 years to get to see him, so perhaps I'm a special case.

Massive pacing fail. I took today off, as it is the one bank holiday we actually get officially. But knowing this, I sort of overdid it on the weekend, then agreed to go out with DH this morning and it was too much. Ended up in tears saying over and over 'I'm so tired' :(

Does anyone else get weepy when they get tired? It seems I just burst into tears for no particular reason when I'm tired. And if I'm very hungry, too. It's like being a toddler.

Glad they figured things out for you, 2kids, but annoying that it took so long. And then you try to live life believing things are normal... I hate that. Also good to hear your meds are finally helping! I was wondering how that was going.

Thanks, Murmuration. :)

Soooo easy to overdo things, then suffer for it after.

I can get weepy when exhausted and symptomatic++ Murmation. Happened to me yesterday - part exhaustion and part allergic reaction. Ds ( who has ASD and LD) has to keep compulsively doing things he has been told not to do in the past. He quite deliberately stroked an animal I am very allergic too, said aloud that Mummy cannot touch it because she is allergic, then wiped his contaminated hand across my face. I know he does not fully understand but it effectively ended our (and his) bank holiday treat. By the time I got to a sink to wash my face and take my puffers I looked as if I had been weeping ( which I hadn't at that stage- just struggling to breath and see since eye swelled up).

2 kids it can be so it and miss, and I'm so sorry it took so long to work out what was causing the hip pain. I had a similar very delayed diagnosis (pneumonitis) which lead to becoming critically ill, a long stay in hospital, dodgy lungs and finally developing CFS, so have been there too. I like the idea of specialised GPs with a bit more knowledge of one area, running inexpensive local clinics as gate keepers. I saw a ENT GP locally who referred me for sinus surgery, after treating me with stronger steroids my own gp was not happy to prescribe. Gps have to have such very broad knowledge!

www.dailymail.co.uk/health/article-2622222/I-NOT-drunk-Teenage-girl-rare-fainting-condition-means-collapses-30-minutes-standing.html

"‘There is a significant lack of awareness about PoTS among both the public and the medical profession.
‘We often find the disorder is under-recognised by physicians, which can impact on the patient’s quality of life through misdiagnosis or being informed symptoms are “all in their head”.
‘As a consequence, historically many patients with PoTS have been given a diagnosis of ME, anxiety or panic attacks."

I've only had my fucking PIP result through!!!

Enhanced and enhanced. Finally. :)

Brilliant news!

Nearly a year of back payment went into my account yesterday

That's amazing Beyond

Btw you do know who I am (I think!) in spite of name change - so lots of yays from me

CFSkate that's SO true.

Pots creates the physical symptoms of anxiety, but caused by the body not the mind - a sort of cause and effect reversal. Preaching to the converted posting this I know!

I often realise I'm in the throws of a pots 'attack' because I have this cold hollow dread in my stomach and start getting anxious. I catch myself getting panicked and follow the thought back and there's nothing actually there behind the feeling! I'm learning to do this and realise my blood pressure has plummetted and my heart is going ten to the dozen, and that cold feeling in the pit of my stomach is lack of blood flow and my digestive system has shut down.

What's very frustrating is that I've been approved for a drug to help after in patient testing last august... but they wanted to see me in out patients first and the out patient appointment has not appeared. Bah humbug.

Hi! Can I join ? Been lurking for a while since don't really have anywhere to talk about my health issues except with my healthy friends and family and I don't constantly want to offload on them . I have Secondary Addrenal insufficiency but am fearing it's heading towards more serious Addisons . Been sick about 4 1/2 y mostlikely got sick after steroids were given to me for reaccurent miscarriages and despite careful withrowal my body couldn't handle it and never bounced back . Took 9 m took to diagnose and had to do the work myself since Gp was clueless. First had myself referred to a rheumatologist due to initial symptoms being similar and family history . No diagnosis just found out from gp and rheumatologist all the things I don't / won't have which was a bonus but then had to do some more research ( love Internet thanks ) and had myself referred to an endocrinologist ( thanks to dear DH private health insurance through work we'd never needed before ) and finally got my diagnosis and treatment . Unfortunately treatment is a guessing game really and meds don't fully take symptoms away . I'm never the same whatever I do just have to take day by day and do what I can which isn't so easy with two lovely but exhausting kids ds9 dd2 . I'm on a steroid , a betablocker for the side affects of the steroid ( my heart goes crazy ) and painkillers. Depending on what kind of day it is I have mainly muscle and joint pain , nausea, dizzyness and endless fatigue . Finding it really hard to ecxept I'm not well anymore and pretty much do most things as much as I can anyway and then suffer the consequences . A lot of physical stuff is out the window though . Haven't been ice skating , bicycling , skiing or anything after getting this . Cant do any extra exercise in top of the every care of dd 2 and housework etc . Can't run etc . Take a lot of taxis everywhere since I can't drive ( really must learn this year) . Can't do a lot of stuff with dd 2 or DS 9 for that matter I used to . Have to delegate cleaning etc to DH and get my DS to help me too . I still really want a one more child and nearest and dearest find it hard to understand since am struggling with two at times already but I don't want to give up everything I wanted just because of this bastard illness . So i fight on . When ever I get any kind off cold etc it lingers on and turns to worse unlike with rest of the family since my immune systems not the same due to steroids . Atm have had a Chest infection or something for 6 w and still coughing after 2 different antibiotics so back to doctors I guess . Mine is a invisible condition so people never know when I'm in horrible pain standing in a bus with a buggy ( taxis now always couldn't do it anymore ) about to fall over with dizziness and nausea when I need more hydrocortisone . So I get little understanding or help from strangers since they can't see I'm not ok .
Anyway I 'd love to join you guys for support if you'll have me sorry for the ramble !

Welcome, Nordic. x

Thanks :)

Hi Beyond, so pleased to hear your news! I found when ds got his DLA II got a bit low after a few days - the realisation he needed it. I hope you are not upset that way. I try to think of ds DLA as an allowance to allow him to do the things others without his difficulties do.

Hi Nordic, but sorry you are unwell enough to join us IYSWIM. I think it was the high dose steroids I had to take ( or I wouldn't be here) that contributed to my failure to return to proper health even once my lungs were functioning better. I don't have Addisons, as I can theoretically still make cortisol if injected with the sythesin stuff -although for some reason I don't get it right -so have low cortisol. I also have POTS which gives the heart going crazy symptoms. Its been 5 years for me, but I am more able than I was at first. I still can't run or keep up with the house work, but I can walk again without keeling over. So there is hope! My son is older (14), so is at school during the day, although I worry about what will happen in a couple of years (his special school ends at 16) as his ASD and LD mean he needs constant supervision and energetic care - but no doubt less tiring than having little ones!

Mainly its for my PsA korma, but also hypermobility syndrome and fainting (probably pots but not official yet) and looooong term depression and anxiety. Plus extra points for my broken nether regions.

All the 'little' things together add up to a big problem.

I was down when i had the medical, and had to verbalise just how bad i was, makes it more real than just dealing with it. Now I am just over the moon that it is finally sorted :)
Annoyingly, I cant drive because of the fainting, so dh will be getting my 'free' car. But yay, chauffeur!
And the back payment will cover my mobility scooter too!

Most definitely

My medical actually went okay, when it finally happened (they no showed twice!) i had an awful cold too, and there was no parking nearby, so when i got in there i was in a right state. Poor interviewer got treated to full blown snot and tears type crying

Hello everybody,

I have been recently diagnosed with PA and have been told I need to start Methotrexate.I saw the consultant 4 weeks ago and have not yet received an appointment.

Does anybody know if this is a long waiting time ?

thank you

Hi jojo :)

Can't really answer you there, when I was first referred I wa breastfeeding so no drugs were prescribed, but on my second visit I'd done all the reading and tests etc already, so they were happy to prescribe (sulfasalazine) straight away. Same then when I changed to methotrexate, it wasnt my first visit so they were fine to prescribe straight away.

Did they take chest xrays and bloods?