Chronic Pain- Daily chat drop in thread #2 All welcome

[Akire]

Hi all well we filled up the last one and now we have our newish chronic pain boards.

This thread is for anyone who has days , weeks, months at time when get chronic pain flair or lives in pain constantly. There are so many conditions that have pain and often limited understand of how it feels to be living through it. All welcome jump in and feel supported

@Inforapenny65

Hey can I join ? I have hyper mobility, osteoarthritis and fibromyalgia- I also suffer with BPPV which is quite a problem at times- I tested positive for Covid today and my joint pain is through the roof! I’m just so fed up with the constant pain- nothing seems to help. I work full time in a stressful NHS role and I’m struggling. Sorry for the moan, I’m a really positive person usually- honest!😵‍💫😀

Welcome welcome! That’s a nice handful of conditions and COVID on top. Hope it doesn’t floor you.

@Doobydoo

Thank you all. It is my neck. I have lower back issues as well but havent had any xray on that. I think I have down played it for years but now I can't. Have physical appt with Physio tomoz so will see. I hope you are all trucking on today. I know I am lucky in many ways but it feels scary re work and home life at present.

I think that’s maybe the benefit of a chronic pain board? Here, @Doobydoo, you don’t have to say you feel lucky when it’s scary, just because you know there may be people with worse conditions or more pain. I imagine we’re all in pain together, and we all know that whatever YOUR pain is, it’s still complete shite And many, MANY of us know that fear of “I must take time off because my pain is just horrible and I can’t ignore it anymore but… my pain also didn’t come with a magic money tree!” I’m so sorry you’re going through one of those “periods” right now. It’s never fair, and it is scary. Hopefully, the physio will have some ideas and I don’t know about your type of job or if your company is big enough to have an occupational health department that can make adjustments for you, or if your income will be low enough that you can maybe top up with any benefits (I know a lot of people talk about getting denied the first time, but I know there is a lot of wisdom about how to then get approved, especially for pain).

Don't worry about the typos @Doobydoo my neuropathy affects my hands so god knows how some of my posts make sense 😂

Hope the mri went ok @RightYesButNo I know they are no fun :( I get very claustrophobic.

@blossomtree323 PIP god it takes so long! I applied in June and had a text message today to say I will have a decision in 10 weeks. I cannot stand unaided, use a frame indoors but a wheelchair outside, I can't stand or cook or bath myself and have back up letters from neurologist and neuro rehab so surely they should just look at it and say erm yep!!

@akire any wheelchair news??

No wheelchair news…day 30! Emailed them again not expecting hear anything. Not had energy to try ring and hang on hold for an hour.

Was up at 7am and shattered but having few minutes of day when not in pain and feels shame to “waste it” by going to bed! Comes to something when 3min is an event akin to watching a solar eclipse

Hope everyone manages get through the night ok. I’ve been going through old audio books but some of the murders are really gruesome. I obviously was much more hard case few years ago when I bought them.

I've a feeling I'll be awake for a while, @Akire.

I've got to cut down on the codeine and NSAIDs for my gut's sake, but it's not an easy play-off.

You can’t win can you need drugs, next day guts all messed up. Take meds for stomach now Two things hurting and repeat.

@cricketmum84 @doadeer I don’t have great news, just about how it went. It were ‘orrible, as my one gran would say. Sigh. Oddly, I had to have a head MRI last month which is usually terrible for my claustrophobia and it was much easier. I’m not sure if I have huge footballer shoulders or what, but my shoulders were touching the sides (?!? And they fit fine a month ago) and due to my condition, I really need to breathe through my diaphragm because my lungs are crap… but they put a big strap around it and then a thing on top of me (which I completely understand was necessary to stop movement). And then my shoulders touching the sides started to actually feel hot (how old was this machine?!?!?) and they didn’t have one of those mirrors on it so you can see the exam room behind you. You know what I mean? I’ve never seen one without the mirror. AND it hurt so much laying on my stupid back, I couldn’t get up afterwards the tech had to help me because my legs were dead. Anyway… this is not the normal experience for most people I expect, lol. But I shouldn’t have put it off until it was so bad, that’s partially my fault. I just didn’t want… one more thing, you know? So now my back feels like… I have words but my gran would smack me for all of them . We should have results in a few days.

And as usual, the doctor always forgets to warn the tech no contrast and then the tech gets upset I can’t do contrast (I understand, because they think the doctor will be upset - he won’t; he knows my veins are a disaster). SIGH. Another day in paradise.

Agh I'm so sorry for you! I always sweat loads when I have them, I'm in constant pain which makes me sweat loads, what a delight I am.

You did it. You got through it. Take it easy now. Do you know what they are expecting to see on the scan?

Finally have some chair news. They hope part will arrive and be able fit on 9th sept. So only another week to go. Day 38 has a nice ring to it.
Totally fed up day with one thing and another. Roll on wine o clock

That's great Akire!! What an ordeal it's been for you

@Akire

Thank you very much! So hard fight anything other than survival when you feel rough. Even when you do the wheels turn slowly.

@RightYesButNo, my last CT scan was hideous. I had to drink a 1,200 calorie high-fat lipid drink and vomited for two days after. And the cannula mangled my arm into a small mound of bruising and swollen flesh.

And apparently the scan didn't show anything. Took them four weeks to tell me that.

Oh happy days

Glad you now have some sort of time scale for the chair repair, but I am still appalled that you have been left so long without a reliable chair. Would it be worth writing to your MP?

Enjoying our week at the seaside, but the pesky foot keeps swelling up and I can only wear Crocs and feeling very stiff again with the fibromyalgia.

Lovely to see the sea, we can hear the waves from our cottage

Great pic @Evenstar glad you are away and somewhere different.

That high fat drink sounds awful!

MP totally useless and since it’s only NHS indoor chair that’s currently working just about inside can’t really complain. But reminds me how bottom of pack I am in society in general. Think with paralympics you see Disabled people doing great things and it’s only due to super effort and huge team behind them. Mostly family who can do all the heavy lifting and taking places and being the physical support. I can’t even ever go out for drive as I’m single so no one to ever take me on simple journey away from home for few miles.

Yes taxi but getting wheelchair accessible nightmare and cost loads. When you struggle with fatigue and pain you could manage half hour in the garden (if I had one) but time you struggled get local park it’s time to come home. Same as going out for drive for 20min it’s just to much taxi hours waiting to see if show up. Then cost so much have to stay out ages to justify it. I just feel like a dog on lead that forever walks around the mile radius of my flat. When I can actually get outside! Sorry for depressing musings

Hooray @Akire for your chair news!! So, I don’t know about your chair, but I have the kind that “folds” in half in the middle, and it will fit in the back of a Toyota Prius Plus. So if that happens to be the kind of wheelchair, you may be able to call a regular taxi company and ask them if they have any drivers with those. I know it’s quite a gamble though. One time a Prius Plus was supposed to show up and instead it was a random Citroen model and my wheels wouldn’t fit snd it was disastrous, lol.

@SpindleWhorl Oh gosh, was that a gallbladder test? I’ve heard about the drink. Oddly, I too have a misbehaving gallbladder (like so many of us?!?) that should be doing fine according to ultrasound (no stones) but I can’t face that test because any extra fat makes me vomit the same way you did! Except with blood, too.

@doadeer You’re absolutely right. It’s over, and that’s what matters. Phew. You know, I’m not sure. I think he’s looking for some kind of inflammation or degradation in my sacroiliac joints, because an X-ray a few years ago showed minor degrading where the bones connect, and now I’ve got this crazy pain.

@Evenstar That’s beautiful!!! Hope your feet start behaving.

having a horrible pain day today. my head has been absolute murder and i lost control of both bowels and bladder when i first got up because the pressure in my head was so intense. waiting to speak to the neurologist and ask if theyll reconisder the decompression surgery for it

in other news, my therapist is sending me for an autism assessment. she said she used to do the adult assessments in her area and if id been sent to her she woudl DEFINITELY have diagnosed it so i think that tells me what i need to knwo but she wants to make it official in hopes ill get support

I have big old electric wheelchair so no hope at all of getting it in car at all. I have Manuel chair for dentist or other quick trips but I can’t push myself more than about 10 metres on totally flat ground so isn’t practically in any way.

Interesting about gallbladders I think mine has been playing up though scan had last year said it was fine. But same right hand rib cage sharp constant pain.

@OneNightTimeMenaceStrikesBack that sounds horrific. Have had many migraines over the years where my head felt like was going explode it is the worst pain ever. It’s always on my 10 on pain scale. What condition causes the compression ?

What things would help make easier for you with Autism diagnoses or even without the official name? Is it mostly how you deal with feelings and stress internal or can those around you do anything to support. Must be millions people well women and society could be doing lot more

@Akire ive got a chiari malformation at the back of my brain which is what causes the pain and the pressure. there is decompression surgery they can do to relieve the pressure but they said no to it the first time they looked but im goign to ask them to look again because the pressures got so much worse recently, its horrendous some mornings and its always made worse when ive been laid down especially if i lay on my back. Im hoping that getting a diagnosis will help other peopel understand me better, i understand myself pretty well and i know where i struggle but other people dont get it,y ou know?

That sounds awful hope they decide to do something can help. Keep meaning do one short course on Autism but it’s such wide condition that might not help much as such individual thing.

@OneNightTimeMenaceStrikesBack I have Autistic DC, not Autistic myself, a lot of Autistic adults I know my age, early 40s are self diagnosed as it was a lot rarer to get diagnosed as a child when we were children and getting diagnosed as an adult is very expensive where I live and must be done privately. The wider Autistic community I'm a part of is very accepting of self identification. Would self identification be an option for you? I know if someone said they're Autistic to me I would take that at face value, but obviously not helpful if you need reasonable adjustments at work or need it to be acknowledged by medical professionals.

hi @LunaAndHerMoonDragons i do already self identify as its so so obvious that i am but it hink for me having an official bit of paper would help with other things as well like arguing against soem of my mental health digsnosises, they insist i have BPD but i dont think that i do , i think its the autism that theyve slapped the wrong label on and i think they would take my protests a bit more seriously if i get the official bit of paper. i definitely self identify though, its so blindingly obvious that i am and its fristrating becaus eive been asking anyone to listen to me for years but no one has, im lucky my psychologist is so on the ball tbh :)

@OneNightTimeMenaceStrikesBack my eldest has recently been diagnosed ASD and ADHD, she just turned 17 this week. The only extra help and support we were given was "join a support group". I do think though that the diagnosis has helped her to understand herself and has helped us manage her meltdowns much much better.

Had a lovely day yesterday, finally managed to take a few days annual leave!! DH took me and littlest DD to a nearby lake walk that's right next to the airport runway. I'm a bit of a plane geek so just imagine how flipping excited I was when an RAF Hercules started doing practice landings right next to us!!!! Then we went for a beer and an ice cream at the pub on the other side of the runway and sat in the sun for a bit.

In the evening DH took my old wheelchair round to an elderly gent who needed one but was struggling with the NHS wait and couldn't afford to buy one. Turns out he is a qualified Reiki healer and said that in return for my kind gift he will be sending me distance healing every night for two weeks at no charge. Bit surreal but hey I'll try anything now! I slept last night from 11pm to 8am so who knows? Maybe that had something to do with the healing!

Amitryptaline dosage is going up again. Let's see if it helps!

Hope all are doing better today and having a positive Friday x

It's so common for Autistic women to end up misdiagnosed with things like ODD or anxiety or personality disorders. They certainly don't like to listen if you disagree with the label they've slapped on you. I hope the waits not too long to get an assessment.