Disabled/chronic illness pals

[Sunflower91]

I feel really overwhelmed and frustrated. I started with chronic allergic reactions a few years ago and it feels like it’s snowballed to a more recent GP visit where they’ve suggested I have PoTs. I feel like I just can’t catch a break- I’m either covered in hives multiple times a day, have blood pressure so low I can barely function or I’m almost passing out when I stand and do basic stuff. The good days feel really far apart and I people around me don’t seem to understand, I have work pushing for more office days but I feel like absolute shit and it’s a real struggle going from being really active to feeling like I’m cooped up all the time.

 

[iloveanimals]

Hi , of course its ok to post. Dont be lonely or embarrassed. You can talk on here whenever you like. Its not a very active thread though, i dont find. You are not pathetic just because you havent got the same lifestyle as others, you would be surprised peoples lives arent all perfect. x

 

[120clemon]

i was told I had fibromyalgia a few years ago, it’s one I argued about, as I feel it’s given when they can’t find another reason, anyway a new dr tested and looked at my history and said it was eds, but more the hyper mobile type, but eve that causes pain, tummy trouble and tiredness. Hope you get answers soon xx

There are still areas of vast unknowns in medicine and I think that reaching a diagnosis in these situations is so difficult. Fibromyalgia is often a diagnosis of exclusion when providers have ruled out other diseases that they can test precisely for though Fibro has it's own diagnostic criteria but are somewhat vague that anyone not feeling well will meet them. You should absolutely have everything reassessed and rechecked if you feel like things are getting worse or there's new symptoms but for some people their symptoms or experience are beyond what current medicine can detect or address at a precise level. Sometimes there isn't a satisfying diagnosis and sometimes the diagnosis is not very relevant from a treatment perspective. Please correct me if I'm really off base but I thought for FIbro and even hypermobile EDS, the core principles are related to targeted physiotherapy/exercise, strategies for managing fatigue, and maybe medications for depression or sleep if that's felt to be a component. So one wouldn't necessarily need a diagnosis to benefit from those treatments.

Even if there's an underlying inflammatory condition, some cases are subclinical which means that they don't meet full diagnostic criteria. For others, the tests are very imperfect so that even if someone has positive markers of inflammation, the tests can be positive even in healthy people with no symptoms so such positive tests don't mean lupus or whatever is present. Also for these subclinical cases, they don't necessarily get worse, the supposed inflammation can just easily disappears over time. Anyways, I wish you the best and you should never hesitate to advocate for yourself or seek opinions from other providers or specialists. I don't think medicine has the answers for everything and I've seen how some friends have been run down trying to chase after a diagnosis or explanation from modern medicine when med doesn't really have answers either.

 

[Gertrude]

I have Neurofibromatosis Type 1 and I can't help but feel like a fraud when I'm in pain because some people have it much worse than I do (I have a mild case - my tumours are tiny and not visible unlike a lot of people)

I have this! I've never 'met' anyone else with this. Nobody has even heard of it tbh.
I've had multiple tumours removed; one in my neck one on the back of my head and loads of superficial ones on the rest of my body.

I have to get an annual MRI to keep an eye on them, but the one last year was cancelled because of COVID. Hopefully this years one will go ahead. Constantly paranoid that I am going to one day have one somewhere that can't be removed. x

 

[iloveanimals]

Hey
I don't know if this is ok to post, but I have long term mental health problems and I am so incredibly isolated and lonely I guess.

I am not like other people my age. I'm 32 and live at home with my mum. I can't work right now due to my mental health problems. I also dont know how to drive.
I've not seen a friend in about 9+ years.
The majority of my social contact is online, even them it is sparingly.

I often feel so behind and pathetic as I often compare myself to people my age, or even younger than me. They have a job/career, independent and so on. Then there is me..

I guess I am ashamed and embarrassed and I hope I don't get judged for posting this..

Just because you cant work or drive this minute, doesnt mean you cant in the fu

Thank you. I appreciate that.
I just feel like a failure tbh. I rely on my mum for alot if I am being honest and I feel like a burden.
It is hard to find support and people who understand.
I certainly never saw my life playing out like this. Before, I was at College, worked part time and then full time. Then life happened and here we are.

Just because you cant work or drive at the moment, that doesnt mean it will be forever, you are quite young yet. Are you on any mental health support groups on the internet, i know there is some x

sorry , i cocked my post up a bit x

Actually if it makes you feel any better , i dont work or drive either and i dont feel bad about it and im older than you are x

I have just seen an anxiety thread on here, i dont know how to link it, but would that be any use to you

i didnt mean to put that emoji thing on it, but it wont come off now !

 

[haveuseenmyfriendbert]

It's so frustrating and I feel like I've been left in the dark because my rheumatologist thinks that "diagnosis doesn't matter." it does if it's causing damage because he hasn't bothered checking into it

IMO it absolutely helps mentally to have a diagnosis, particularly if have to explain to family/friends/employers why you can’t do things (= defend yourself sometimes unfortunately. It also means you can research symptoms, treatment, therapies etc yourself.
it also means you can speak to peers, support groups etc and understand how others are doing. Until lockdown I was attending a monthly support group. I was really nervous going at first and put it off a few months then just went for it. it just helps having people who understand and aren’t just nodding along and empathising.
Also, and most importantly, you don’t want to find the disease has caused damage to joints or small bones where it could have been avoided. That is a symptom which I’ve never had totally under control with any treatment so far which is soul destroying enough. But if you could avoid it, you absolutely should be getting adequate support to do so! 🤍

 

[Bambix]

Aw yay, I'm glad they you've all found this thread! I'm sorry to hear that you're all struggling. I can relate with the delay or treatments, appointments and the worry of it all.

Winter is always the worst time for me. I was diagnosed with Fibromyalgia (potentially wrong diagnosis though) but I'm struggling quite bad at the moment. I speak to my rheumatologist in a few weeks and I'm going to push for further testing. I was told fibro 5 years ago but without any testing being done and I think it needs doing. But I hate having to advocate for myself, because I don't like being seen as someone who just Googles symptoms but this has been going on far too long without any real answers I feel confident in.

i was told I had fibromyalgia a few years ago, it’s one I argued about, as I feel it’s given when they can’t find another reason, anyway a new dr tested and looked at my history and said it was eds, but more the hyper mobile type, but eve that causes pain, tummy trouble and tiredness. Hope you get answers soon xx

 

[iloveanimals]

This was me last week. Is there anything we can do to help? X


Oh wow, so you definitely had proper testing which is good. I literally had my blood tested for iron (which came back fine) but that was it. I just feel lumped with Fibro. I've recently discovered that rheumatoid arthritis is heavily connected to my other health problem. My main concern is that I've been left for years (5 years since fibro diagnosis but started struggling 8ish years ago) without any real help apart from meds that aren't working any more and what damage could have been caused if it's something other than fibro. Especially if my lung problems I've had this last year are connected. Also, any long lasting side effects from meds I may not have needed. I've been told recently that I have arthritis in my foot as well.

I've written out some notes ready for when I speak to my rheumatologist. I want a full MOT because I'm just fed up now. I want lupus, EDs, my B12 levels and rheumatoid arthritis to actually be looked into. I'm also under a neurologist and he's looking into MS as well but he's already thinking it's Functional Neurological Disorder (which I feel errr about as he's spoken to me once and it seems like another scapegoat diagnosis)

It's so frustrating and I feel like I've been left in the dark because my rheumatologist thinks that "diagnosis doesn't matter." it does if it's causing damage because he hasn't bothered checking into it

thats no good the way they are treating you. I had the rheumatoid arthritis test as my symptoms were so similar. Really thats the first thing they should do as fibro is process of elimination like i said. Good on you for taking notes. Unfortunately i wasnt diagnosed until i changed drs and luckily got a decent one who is known for understanding fibro. Do you have ibs and irritable bladder, you dont have to tell me but im saying they are well known for being highly connected to it, as are menstruation problems. If they have put you on amitryptiline the dose usually needs to be more after a while. I really hope you get your diagnosis properly and not just guesswork from them, because in a way you feel better when you know for sure. Please let me know how you get on, if you can spare the time xx

 

[Strawberry13]

I’m just here to say I’m sick of being sick

 

[ButtonMoon]

You poor thing, that sounds so stressful.
Living with a chronic illness and collecting others like they're pokemon cards is so frustrating. It does feel like there's no break xx

 

[Lukeal70]

Didn't know this thread existed.
Hi, I have a diagnosis of ME, Fibro, Endometriosis, MCAS, POTS, hypermobilty, Diabetes and on huge waiting list for AUHD. Absolutely fed up of my life, not that I have much of a life. Spend my days bedrotting, being gaslit by medical people & disappointing my family. Tattle usually the only thing that gets me through the day. HI

 

[DanaScully]

Hi danascully, i have cfs and fibro too. How does pacing work ? Ive been terrible all winter and now its in my jaw too, Sorry for your endo thats awful on top. Love to you too. xx

Hi, sorry to hear things have been difficult for you. Winter always seems to make me feel worse too.

Grading and pacing is a tool I learnt when I was diagnosed with ME/CFS. If you search grading and pacing online there should be lots of resources. This covers the basics:

Good luck and let me know if you have any questions.

 

[katiesmith81]

Just knowing I have people to speak to helps. My friends all say they are there for me but in reality they aren’t. I’ve reached out to them before. I know people are busy and have their own stuff going on but I am always there for them.
this is embarrassing but my mobility is that bad I fell and done a wee all over the bathroom floor yesterday. I won’t move from the couch now till my partner gets in from work. I have emailed a nurse to ask for advice. I feel too young for carers as I’m only in my 20’s but I don’t know what else to do as I have no family nearby x

Hey least you were in the bathroom and dont worry about being embarrassed, I had a temp ileostomy due to having a J Pouch made for Familial Adenomatous Polyposis once I woke up (had real problems getting the bag to stick sometimes was a nightmare) ended up with the bag once emptying all over the carpet, I laugh about it now but yeah how the heck I managed to clean that up without it being stained probably due to how quickly had to clean it up was quite impressed with myself

Once coming back as I thought the ileostomy had prolapsed (come out like an elephants trunk) so went to A&E at the hospital (ER), when going back when I got out of the taxi the bag when walking back home emptied all down my leg, fortunately (apart from the numerous other accidents I'd have from falling asleep a lot) yeah were the only two major ones yeah one being outside

I mean its probably due to the likes when having myself washed by a nurse or least a HCA after the J Pouch operation when I essentially wasnt wearing anything at all the day after the operation as to why I dont get embarrassed, you take great care of yourself and yeah things like that happen sometimes

Just now getting over a bowel infection haha found out the source for it so will be why nothing much was getting absorbed so quite happy with that

you are not a fraud, pain is pain, people cope with different pain levels in different ways. Plus theres the emotional aspect of it too x

Yeah they very much do, I think after when essentially was put back on foods when having my temp ileostomy reversed (laughed before stating this is round two haha, or where the fun begins) when essentially the bowel hadn't started working due to pain meds so essentially was in crippling agony for about 4 hours was the most horrendous pain I've ever gone through so I can feel for you there

 

[Pizzledizzle]

i was told I had fibromyalgia a few years ago, it’s one I argued about, as I feel it’s given when they can’t find another reason, anyway a new dr tested and looked at my history and said it was eds, but more the hyper mobile type, but eve that causes pain, tummy trouble and tiredness. Hope you get answers soon xx

Another hEDS sufferer here Took over 20 years to get a diagnosis & even now I have one, it’s a constant up hill battle against medical professionals that don’t know anything about it. I really hope you get a correct diagnosis & care plan in place sharpish x

 

[Melian]

The chronic tiredness / oversleeping because of my medication (it's better than being in pain and some of the side effects I've experienced from other medications) is so bloody annoying

 

[DanaScully]

Hi! Checking in. I have ME/CFS, autoimmune thyroid disease and endometriosis.

I'm pacing quite well at the moment so not feeling too awful. Did have an endo flare whilst driving recently which meant I had to abandon my plans and head straight back home.

Sending love to you all.

 

[ButtonMoon]

Just bumping to see if there are any more disabled/ chronic illness pals about that want to chat.

 

[iloveanimals]

Ive had more flare ups than ever this winter. I think the constant doom and gloom of the pandemic might be taking its toll. Hi katie smith81. You are a brave person. xx

 

[Isa Drennan]

Neurologist wants to monitor my condition with a combination of meds and weight loss but has made my first follow up appointment the week AFTER Christmas

Adding 10k steps plus changing my calorie deficit from 1200 to 1500 has worked wonders though!!

 

[haveuseenmyfriendbert]

How is everyone getting on?