Unhelpful comments

[RainbowZebraWarrior]

Hi all. No matter what your issue, nobody experiences your pain.
I have hypermobile EDS, Osteoarthritis, PoTS, MCAS and other issues. My family seem to be sick to death of me 'going on about it' so I've stopped as per their requests. I've also noticed on some threads that there are replies stating "I still work 60 hours a week, refuse to let it beat me" Yes, I've done that for 40 years and am now utterly broken. Literally from being superwoman to disabled in the blink of an eye. I am sick of whining, but also sick of being dismissed. I'm so thankful for the new chronic pain board. And I so want to be positive, but just needed to vent today and also reach out to those who feel lost. Huge hugs to you all.

@Twilightstarbright ugh the "you look fine" really annoys me. I'm not even 30 yet and I cant walk without my rollator/crutches and I'm in a wheelchair when things are really bad. clearly there's something wrong with me but they seem to think because I'm young I can't be unwell.

Ooh hello everyone. I'm so pleased I bumped this thread yesterday. Gosh we all have such similar stories (as well as similar conditions too) @Stevie6 yup, totally get everything you've said. I'm waiting for blood tests to come back this week. Checking for Neuropathy / Peripheral nerve stuff and poss Vit B12 deficiency among other things. Consultant says if those things are ruled out then diagnosis is Fibro. I just keep adding things to the list. I feel sure others must think I'm making it all up or I'm collecting diagnoses (why would anyone want multiple crap painful conditions? - I've no idea)

@HerRoyalRisesAgain agh, that's so tough. I managed to get to 40 odd before everything really broke. Do you have good support? Are you an EDS UK member?

@RainbowZebraWarrior I hope it's not fibro, I don't know how well your other conditions are managed but me and so many others have been diagnosed and basically left to sort ourselves. The rheumatologist who diagnosed me basically gave me a website to look at and then discharged me, DRs just seem overly keen to push antidepressants at you and that's really not a route I want to go down.

@RainbowZebraWarrior I'm lucky I have my mum to help out a couple of times a week. I manage, but only because I have no choice!

@Stevie6 My other conditions, whilst not really well managed, I'm well supported. After years of being denied or rationed painkillers by the GP, my consultant not just tells them I need high strength and it's not up to them to 'review' it. I've had to fight a lot, and lost it with the GP for trying to push antidepressants that she now knows not to bother. I have a fantastic team of Rheumy OT's, Physio and Podiatrist. Plus I can access my consultant or Specialist Rheumy nurse any time. I'm aware that if the NHS gets put under any further pressure, these could be stopped at any minute. A new consultant could come along any time and decide I've had my moneys worth so to speak. I've learned to be a good advocate for myself though. It's just bloody knackering. If it is fibro, I do believe it will just be added to my list of conditions and I'm not expecting any further treatment in that respect. And that's what makes fibro so difficult if it's your primary condition. It's often just diagnosis then diacharge. It does happen with EDS patients too. There seems to be quite a postcode lottery too as well as perhaps hitting lucky with a GP or other healthcare professional who has an interest in your condition. I think this is why Support Groups are so key.

Fibromyalgia on it's own is quite often misdiagnosed in patients who then go on to be diagnosed with Ehlers-Danlos syndrome. Worth checking EDS symptoms. Sorry if this doesn't apply to you, but I know it does happen.

@HerRoyalRisesAgain I know what you mean. I'm a single parent so it's exactly as you say you manage as you have no choice.

@RainbowZebraWarrior just had a Google and can identify with a lot of that. I actually do have a curve in my spine that was only picked up when I was 14 too. Will do more research into it, thanks

Good luck. Well worth delving deeper @Stevie6. I think there tends to be more support for EDS or Joint Hypermobility syndromes. Happy to help if you have any questions.

Thank you! I'm early 40s and walk around like a 90 year old most days.

@Stevie6 I feel that! I get overtaken by little old ladies in the street!

i swear soem people try and race me because they think its amusing! im there chugging along on my crutches or on my wheelchair and theres people speeding up to get past me and racing to get through doors before me and even worse, letting the doors go in my face.......im sure soem of them just dotn register the mobility aids at all :(

@HerRoyalRisesAgain my teenage kids hate walking with me as I'm so slow

@OneNightTimeMenaceStrikesBack a lot of ignorant people out there who just don't care unfortunately, give them one day in our lives and see how they feel

yeah, a lot of ignorant people @Stevie6, they dont get that they could be one accident or one mis step away from where we are

@OneNightTimeMenaceStrikesBack I've had actual races on my mobility scooter

Others like you say just don't register at all. Especially in my wheelchair. Been trampled many a time.

@HerRoyalRisesAgain i get little old ladies and gentlemen racing me with sticks and crutches they are so much speedier than me though. have yet to race anyone in my wheelchair yet though, i dont quite have the stamina for pushing it yet

No, can't race in my wheelchair. I'm too heavy to push myself for long!

Crohns, RA, PA and possibly Fibro. I gave in 4 years ago. I went part time, I refused to carry anything heavy at home or work, I basically just said fk it, I'm not doing myself any favours here and it's been great! I don't feel guilty and I get help when I ask for it. I am now pretty spoiled by my employer and my family and keep a lot better because I no longer put myself under any pressure. Took me 30 years to get to that mindset but it works. Turmeric didn't tho!!!

i also have epilepsy and its a pain in my backside. my seizures are brought on by being tired, my period, stress and being too hot. all things i struggle to avoid though i am on the waiting list for an ablation so hopefully that should take away the periods being a trigger. People are so rude when im slurring after a seizure, they make jokes about me being drunk and laugh about it but actually, its not funny, its bloody scary when you lose control of yourself and it makes me feel so vulnerable. plus i have had people try and stick things in my mouth because they 'dont want you to swallow your tongue' thansk mate but you knwo thats not been the adivce for a looooooooooooooong time, you never stick anythign int he mouth of soemone seizing, not unless you potentialyl want to lose a finger at any rate!

I can relate to this. People see a tiny snapshot of your life and think they know it all!
I volunteer at a kids' sports club and because I can do that so many people seem to think they have "evidence" that there is nothing wrong with me.
Yes, I smile and laugh and run about with the little ones even when I'm feeling rough. I don't want to let them down, plus they cheer me up and it's something I did before I was ill so I like that reminder that I'm still me, if that makes sense? But it is a huge effort. And it is one hour once a week. What the "she looks fine to me" brigade don't see is that I usually can't get out of bed before lunchtime the next day.
But sure, judge me on that one hour a week - don't let what happens in the other 167 influence your opinion. 🙄

I hate the fact people don't seem to believe me. I started having back problems in my 20s but just ploughed on, working, single mum so was always busy, did most of my own DIY etc. I've now got a few things wrong with me plus as yet undiagnosed joint pain and some days I could just sit and cry with it, but because I dont, people just seem to remember who I used to be and i'm not that person anymore. My dc have started to understand now but other people still expect me to be tough I think. It's like you say, if you try to explain to people they just think you're whinging, they have no idea what it feels like. In the course of 6 years i've gone from someone who could clean the house and do both gardens in a day to someone who on a bad day can't peel a potato for the pain it'll cause in my hands and arms. It's frustrating and embarrassing, my elderly neighbours are fitter than me. Friends my age just dont get it.

Thank you for posting, I didn't know there was a new board! Another one sick of, "Well, you look fine". Erm well that's lovely, I wish I felt fine. I've gotten to the point where I don't enjoy meeting new people anymore. It's just too hard to explain to them that I can't always do things, that I'm always in pain or that I seem intense because I'm trying really hard to concentrate on what they are saying because the pain/exhaustion is overwhelming my brain. Trying to deal with people's reactions can sometimes be more exhausting than dealing with the illnesses themselves.
for you all!

Tell me about it, I've got Fibromyalgia, ME/CFS, Arthritis & peripheral neuropathy in both legs. My mum says things like "you need to walk about more, use it or lose it" I'm in pain just standing up to clean my teeth, I don't walk, I totter about like a toddler just learning to walk. I get moaned at for taking painkillers & told I will be addicted to them, nobody understands what chronic pain is until they have it. I would give anything to not wake up in pain every morning.

"Have you tried meditating/mindfulness/stopping all medications/smoking weed/turmeric/physiotherapy/dieting/going gluten free/cutting out all red foods/rubbing onions on your toes/jogging 5 times daily/getting more hours at work/using a hot water bottle every fourth Wednesday/giving up and dying.

Does anybody else get fed up with being told that you can't possibly have pain in that joint because RA doesn't affect that joint?
Or muscle pain isn't a feature of your particular neurological condition ( the implication being that it must be imaginary).
Nothing works for me, least of all turmeric.
Prednisilone helps when desperate, but I am not allowed/ I am scared to take it because of osteoporosis and fractures.
I am sure hydrotherapy would help, but I am not bad enough to qualify yet. Sigh.

"Have you tried Nytol to help you sleep?" Oh, well bugger me why didn't I think of that! That'll sure take away the feeling of someone repeatedly smacking my joints with a hammer, cheers, problem solved.