I had it was a consultant I was seeing for my asthma, she was very rude and told me I needed to see a psychiatrist and lose weight. I complained and said I didn't want to see her again and was sent to another consultant at a different hospital. I know not everyone believes in it but she wasn't even seeing me for my fibromyalgia!Out of interest, How do you feel when people say fibromyalgia isn’t actually an illness, especially if it’s the medical profession saying that?
Have you experienced that much? I’ve had hospital admissions with patients who find they’re not taken “seriously” when they present with this.
Hope I don’t offend anyone saying this I just wondered if it’s the norm.
I’ve thankfully never had that with medical professionals. But I’ve come across people in my personal life who don’t seem to think any of these illnesses are real.Out of interest, How do you feel when people say fibromyalgia isn’t actually an illness, especially if it’s the medical profession saying that?
Have you experienced that much? I’ve had hospital admissions with patients who find they’re not taken “seriously” when they present with this.
Hope I don’t offend anyone saying this I just wondered if it’s the norm.
So much of this sums me up right now.I’ve thankfully never had that with medical professionals. But I’ve come across people in my personal life who don’t seem to think any of these illnesses are real.
I guess it’s hard for people to grasp how unwell a person can be especially if they see them once in 3 months on a relatively good day.
I wonder a lot about the link between trauma, in particular childhood trauma and chronic illness like fibromyalgia. The majority of people I know with the diagnosis have some kind of history of trauma.
I would say the isolation is probably worse than the physical symptoms. I’ve gone from being a really busy, sociable woman to someone who has very little confidence, is scared to make plans with friends, go through times where I’m scared to leave the house, and can’t even contemplate going to the hairdressers at the moment.
I know a little of how extremely unwell you have been montyWell, don't know if you remember last year when they diagnosed me with fibro, then jokkkkeeeee definitely wasn't that.
I remember last February I was rushed into hospital and they gave me morphine (and sent me home with oramorph) and said we shouldn't even give this to you because the pains in your head.
Well no it bloody wasn't.
Now because of all the stuff that happened last year, I still have my chronic pain because of the internal damage done. And I also have chronic pneumonia and chronic lung issues. Like, right now I have a heavy cold and I'm struggling to breathe a lot of the time.
The only benefit is, I'm no longer on 15 plus pills a day. I'm on 0. Still hurts like shit, but nothing hurts as much as dying in the way I was. This is bare able now.
Same here, and also had EMDR nearly 20 years ago which helped xSo much of this sums me up right now.
I did suffer childhood trauma which I've tried to deal with in therapy and also by having EMDR, in my case I do firmly believe they are linked.
I agree about the vloggers taking there health for granted. It's like when Isabelle from the Ingham family had really bad tonsillitis and they kept dragging her round and sending her to school ect.I’ve thankfully never had that with medical professionals. But I’ve come across people in my personal life who don’t seem to think any of these illnesses are real.
I guess it’s hard for people to grasp how unwell a person can be especially if they see them once in 3 months on a relatively good day.
I wonder a lot about the link between trauma, in particular childhood trauma and chronic illness like fibromyalgia. The majority of people I know with the diagnosis have some kind of history of trauma.
I would say the isolation is probably worse than the physical symptoms. I’ve gone from being a really busy, sociable woman to someone who has very little confidence, is scared to make plans with friends, go through times where I’m scared to leave the house, and can’t even contemplate going to the hairdressers at the moment.
Sorry now I’m on a roll. I think another reason why many of these vloggers, especially mummy vloggers drive me nuts is because so many of them take their health for granted.
I have ME - was diagnosed in 2011 after suffering a year or so - changed my whole life - and my body! I pick up every infection going as well.Anyone else suffer? I've got Fibromyalgia/ME and a whole host of things that come with it. It's painful and lonely (which is why I spend alot of time on here!)
I took myself for a walk today which I don't normally do and I pushed myself, probably a little bit to much and I'm now in agony head to foot. I just want to sit and cry because of the pain and I guess the point in this thread is that I'm hoping I'm not alone.
Thankfully I'm quite good at not picking up infections, unless they're ear infections then I get them fortnightlyI have ME - was diagnosed in 2011 after suffering a year or so - changed my whole life - and my body! I pick up every infection going as well.
Thankfully I'm quite good at not picking up infections, unless they're ear infections then I get them fortnightly
I’m like that with my throat although I’ve had an ear infection and eye infection this week!Thankfully I'm quite good at not picking up infections, unless they're ear infections then I get them fortnightly
Oh wow my dad had MDS, never come across anyone else with it. So sorry to hear you suffer from this. What is the outlook for you? Unfortunatly my father passed away age 61 from it, a few months after a bone marrow transplant.Yes. I have MDS(myelodysplastic syndrome) which is an incurable bone marrow failure disease. It can develop in to acute myeloid leukaemia which sadly it did 3 years ago. Currently in remission from that but still suffer the effects of the MDS. I currently go to hospital 3 times a week for blood transfusions and have jusr started back on chemotherapy as latest biopsy showed slight changes. Also take 14 tablets a day. It sucks. Outwardly I look fine so a lot of people assume I'm faking it or exaggerating my symptoms. Thankfully I have a great husband, two incredibly brave and strong children and a fantastic family around me. I've lost friends along the way but I've learnt who is really there for me. It's a bloody lonely and frightening place to be sometimes though.
Im so sorry you're going through all that. The loneliness is so hard isn't it? I find it especially hard in the early hours when the pain keeps me awake.Yes. I have MDS(myelodysplastic syndrome) which is an incurable bone marrow failure disease. It can develop in to acute myeloid leukaemia which sadly it did 3 years ago. Currently in remission from that but still suffer the effects of the MDS. I currently go to hospital 3 times a week for blood transfusions and have jusr started back on chemotherapy as latest biopsy showed slight changes. Also take 14 tablets a day. It sucks. Outwardly I look fine so a lot of people assume I'm faking it or exaggerating my symptoms. Thankfully I have a great husband, two incredibly brave and strong children and a fantastic family around me. I've lost friends along the way but I've learnt who is really there for me. It's a bloody lonely and frightening place to be sometimes though.
I was diagnosed 5 years ago at the age of 30. Was quite a shock as I was convinced I'd be given iron tablets and sent on my way. I know I'm never going to grow really old but transplant is still an option and one I'm seriously considering. Sorry to hear about your dad. It really is a horrible diseaseOh wow my dad had MDS, never come across anyone else with it. So sorry to hear you suffer from this. What is the outlook for you? Unfortunatly my father passed away age 61 from it, a few months after a bone marrow transplant.
I too, suffer multiple chronic illnesses and outwardly look "fine" at times as I am just 27 though I've been suffering since about 12. People can be very judgemental about illnesses and just base everything on looks. I truly look like crap most of the time but of course I'm not going to show that. Why should I have to? I always want to present myself and not look sloppy and worn out as it makes me feel even worse about myself so try and make a bit of an effort when I leave the house (which isn't often a the moment). Going through a particularly rough patch. We all know what that is like :/
I sometimes wonder how you can be in a room full of people and still feel the loneliness but I feel it often.Im so sorry you're going through all that. The loneliness is so hard isn't it? I find it especially hard in the early hours when the pain keeps me awake.
@Coconutshy I'm sorry to hear about your Dad.
I'm a similar age to you and I struggle to get out too, only go out with my Mum or my best friend.
I second this!Sarah, you are a warrior.
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