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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
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
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..
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..
iloveanimals
Chatty Member
creep, i was given a kind of blood test to check for inflammation. I also had my thyroid tested and was tested for lupus. The rheumatologist decided i had fibro through a process of elimination. I was also sent for an xray on my hands and was found to have osteo arthritis. They were quite surprised by that as i was still young for it. I didnt get a proper diagnosis for years, it took a very long time and at points i felt like they thought i was putting it on. I hope they sort you out soon , the exhaustion of its awful xx sorry for everybody else on here who is struggling too. Keep on at them though you deserve a proper diagnosis.
Hello Kitty
VIP Member
I have Crohn's but have been in remission for a few years now, so all good at the moment. It's obviously a bit of a worrying time at the moment with Covid though as my immune system is low from my medication.
Ih8mkinusernames
New member
A list as long as my arm of conditions, including CFS, firbro
After a missvle battle to gain a level of control back to my life, getting my pain and energy to managable level, being abil to stop using a walking stick, even looking to reduce pain medication.
I've been sent back to that place again thanks to lockdown, post lockdown 1 felt some detraction, but we're not half way thou lockdown 3 and the pain is unbeable agine, I'm struggling to walk to skim the suface
I do not have it in me to go thou the battle agine, it was soul dissroying the last 2 times.
Today i miss a dose of pain meds i cant even sit up, i was doing so well i hardly noticed i missed a dose would think it was a wose day.
I just can live with this.
After a missvle battle to gain a level of control back to my life, getting my pain and energy to managable level, being abil to stop using a walking stick, even looking to reduce pain medication.
I've been sent back to that place again thanks to lockdown, post lockdown 1 felt some detraction, but we're not half way thou lockdown 3 and the pain is unbeable agine, I'm struggling to walk to skim the suface
I do not have it in me to go thou the battle agine, it was soul dissroying the last 2 times.
Today i miss a dose of pain meds i cant even sit up, i was doing so well i hardly noticed i missed a dose would think it was a wose day.
I just can live with this.
Creep
Active member
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
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Creep
Active member
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.
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.
iloveanimals
Chatty Member
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 xI 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)
Countrybumpkingirl
Chatty Member
Hi all,
So I have a complicated medical history of multiple autoimmune diseases (type 1 diabetes being the main one) and then 2 and a half years ago I had a heart attack out of the blue (was playing hockey at the time so I was fit and healthy). Last year my health took a turn and my heart got worse again and after a stent was fitted the hospital finally started looking into it all a bit more and I am currently under investigation. My bloods were showing I am positive for the Antiphospholipid syndrome antibodies but the haematologist has said because I haven't had evidence of blood clots they can't for certain say I have it, so now I am being tested for lupus and other conditions. I suffer daily headaches, chronic fatigue and pain all over including arthritis in my hips. I'm 31 as well. I also caught viral meningitis this year which has had massive impacts on my brain and they are still wondering if i am still suffering.
Up until September/October I was working full time and now I just can't work. I am a chartered surveyor and I just feel exhausted 24/7. Just hoping at some point I can get back to how I was a year or so ago
So I have a complicated medical history of multiple autoimmune diseases (type 1 diabetes being the main one) and then 2 and a half years ago I had a heart attack out of the blue (was playing hockey at the time so I was fit and healthy). Last year my health took a turn and my heart got worse again and after a stent was fitted the hospital finally started looking into it all a bit more and I am currently under investigation. My bloods were showing I am positive for the Antiphospholipid syndrome antibodies but the haematologist has said because I haven't had evidence of blood clots they can't for certain say I have it, so now I am being tested for lupus and other conditions. I suffer daily headaches, chronic fatigue and pain all over including arthritis in my hips. I'm 31 as well. I also caught viral meningitis this year which has had massive impacts on my brain and they are still wondering if i am still suffering.
Up until September/October I was working full time and now I just can't work. I am a chartered surveyor and I just feel exhausted 24/7. Just hoping at some point I can get back to how I was a year or so ago
Creep
Active member
Bless you. I can relate with having people around but sometimes they just don't "get it." I was going to suggest getting some advice from a professional. Let us know how it goes! I don't have family nearby either and fully rely on my partner too. It's not embarrassing at all, we all understand these things here so please don't worry. Xx
It isn't. I'm going to give this rheumatologist one final shot before I think about changing so we will see how this appointment goes. I do have issues with bladder, bowel and menstrual problems too. I didn't realise it was connected to fibro so that's good to know. I would be happy to accept any diagnosis if I feel like I haven't just been lumped with it, as you say it's a process of elimination and they have just skipped that bit entirely xx
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.
iloveanimals
Chatty Member
dont be embarrassed love, you cant help being unwell can you ? x maybe dont think of them as carers, more just an extra set of helping hands x
iloveanimals
Chatty Member
Ive been having a shit time with fibro and arthitis. I hate winter.
Schnoodle123
Well-known member
Hey everyone!
Hope you’re all as ok as you can be.
I’m doing ok... a bit shit tbh. Fibromyalgia and chronic fatigue is well and truly kicking my arse and I’m done with it.
I’m so tired trying to carry on as normal and work (pt) and look after the house and my little girl and do everything for everyone
Hope you’re all as ok as you can be.
I’m doing ok... a bit shit tbh. Fibromyalgia and chronic fatigue is well and truly kicking my arse and I’m done with it.
I’m so tired trying to carry on as normal and work (pt) and look after the house and my little girl and do everything for everyone
TicketyTock
Active member
Everybody’s life follows a different path , please don’t be too harsh on yourself - you are still very young - your life could be completely different in 18 months time !
iloveanimals
Chatty Member
Hi countrybumpkingirl, goodness me you have been through a lot, i hope you get a formal diagnosis for your latest symptoms. I dont want to say the wrong thing ,so will leave it there for now. Please let us know when you have any updates. Or just a chat obviously. Hopefully someone with a bit more insight will also reply to you soon, i only really have experience in cfs, fibro and arthritis and even then i am just muddling my way through. xx
ProphecyGirl
VIP Member
My mam has ME, so I can't exactly relate but I know how hard it is for her so I'm sending you all love
SkinkaareFan
VIP Member
I have very recently had a diagnosis of fibro after 14 years of struggling. I feel there's more than just fibro but don't know how to bridge that without being told that Dr knows better. My surgery is pretty shit but other surgeries are full so I'm stuck.
I have been on the same pain meds for 8 years and have recently been given amytriptyline. My meds have been reviewed several times over the years and when I asked for my prescription this month a pharmacist phoned questioning why I take them and saying she's putting a note on to say I should be taken off them as I'm too young to be taking so many (I'm 30 this year) and telling me they don't help... Even when I'm telling her they do help and when I miss a dose the pain is so much worse. The difference between missing a dose and not is me being in so much pain I just want to die. I'm at a loss what to do, my OT said I should call and speak to my Dr but the receptionists are little hitlers and don't let you speak to one l. I'm so bloody stressed about it and pretty angry that thod pharmacist that knows nothing of me has decided that the pain meds don't help? It's actually ridiculous.
I'm fully aware they don't 100% take the pain away but they reduce to a level where I'm OK to be bloody alive. I struggle with even walking, my joints dislocate alot and are always swollen and burning but apparently that doesn't matter because a random pharmacist knows best...
Sorry for the rant, my husbands probably sick of hearing me rant about it and worry about it so it's nice to share it somewhere else, if you get what I mean?