Chronic illness

[GiggleBee]

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.

 

[Peeltheavocado]

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.
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.

 

[Departed member 294]

Well, 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.

 

[SunshineDreamer]

I don’t have a chronic illness but I think anyone who does suffer from one is a bloody warrior.

 

[SarahGard83]

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.

 

[SarahGard83]

Not feeling much like a warrior today. Rough chemo session. Trying to switch off but brain won't allow

 

[Thecolourrainbow]

I was diagnosed with Ulcerative Colitis 3 months ago so pretty new to the whole chronic illness thing.
I find the fatigue the hardest to deal with, it's so hard to just get out of bed and no one understands, I often get the reply 'I'm tired too'. But no one gets that it's another level, like having to get past a huge mental/physical barrier or 'walking through mud'. I'm in remission but think this is just part of having a chronic illness that I'll have to live with. Feel so sad when I see everyone living life and I'm like this at 26.

 

[GiggleBee]

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 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.

 

[Truthseeker]

I suffered multiple pulmonary embolisms 7 years ago and almost lost my life, my fitness never returned and I was put on warfarin for life. Three years later both of my knees went big time and I was housebound for a good while x rays showed chronic osteoarthritis in both knees and it's also in the back of my femur on my right leg. I also developed chronic peripheral lymphedema around the same time and my legs are now around 4 times the size they should be and so heavy and painful, getting shoes now is nigh on impossible and I can no longer wear my wedding ring. I thought things couldn't get any worse and then last year I was rushed in to hospital and kept in resuss for 5 hours with a heart rate of 200+ beats a minute. I spent several days in hospital and was finally diagnosed with atrial fibrillation. Then two days after Christmas I found out I am in the early stages of heart failure.

I am in constant pain, the tramadol no longer works, I am constantly out of puff partly due to the damage done by the PEs and partly because of my heart problems but do you know what, I'm still alive.

I figured I could do one of two things, sit there, dwell on things and just allow myself to vegitate OR make the best of the hand I've been dealt. I've just had a few days at the seaside, I couldn't walk far and it feckin hurt like hell. The fresh air did me so much good though and I actually slept for a few hours each night. I practice mindfulness have found hobbies that distract me from thinking about my pain and conditions and I smile every day.

Life is short, it is up to us to make the best of it, it isn't easy but for me in particular giving up just isn't an option. There are actually people out there who are far worse off and would trade places with us and that humbles me. Use it or lose it.

 

[Peeltheavocado]

Well, 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.

I know a little of how extremely unwell you have been monty

So 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.

Same here, and also had EMDR nearly 20 years ago which helped x

Sometimes I feel like they diagnose fibro because they don’t know.

 

[Peeltheavocado]

My anxiety got a whole lot worse after becoming ill. Especially my social anxiety. I'm currently in therapy for it.

Hope it helps.

 

[GiggleBee]

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 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!

@Peeltheavocado it's awful isn't it? Mine started after misdiagnosed glandular fever.

 

[Peeltheavocado]

Just out of interest have any of you who have spent lengths of time mostly housebound ended up with social anxiety and agoraphobia? Even if you were extremely sociable before.

 

[teaspoon]

From having 2 jobs and working since age 15,(im 62)ive had to give up work and claim disability benefit due to severe osteoarthritis in both knees,also Angina,Asthma,Leaky heart valve,high blood pressure and cholesterol,and Essential tremor!!!Phew!!!i rarely go out as in so much pain in my knees,so do all my shopping online(so handy)I am on Morphine 3 day patches,oramorph,naproxen,inhalers,blah,blah,blah.I envy older people who have good health!!

 

[SarahGard83]

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.

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 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 disease

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 sometimes wonder how you can be in a room full of people and still feel the loneliness but I feel it often.

 

[GiggleBee]

Just out of interest have any of you who have spent lengths of time mostly housebound ended up with social anxiety and agoraphobia? Even if you were extremely sociable before.

My anxiety got a whole lot worse after becoming ill. Especially my social anxiety. I'm currently in therapy for it.

 

[NitrousOxide]

I've read that blacking out can sometimes be linked to mental health. I've had a few instances of syncope-type blackouts where its been brought on by me seeing something distressing (for me its usually been a fear - like when that gymnast broke their leg during the Olympics a few years ago) that has then made me feel really sick/anxious. I can usually spot the signs now and will make sure I lie down before it happens.

It sounds like it could be psychogenic type blackouts though? http://www.heartrhythmalliance.org/stars/uk/psychogenic-blackouts It says it can be brought on by chronic fatigue, IBS, fibro and similar conditions.

Thank you for the link. A doctor once told me they were probably panic attacks but I feel a bit like that was just brushing them off (not that panic attacks aren't serious) because I didn't feel particularly anxious before some of them and the first time it happened I was a child/early teen and I've felt much more panicky other times and not blacked out! Bodies are confusing.

Glad you've found a way to spot it coming on - I usually just need to lie down for a while too and have had to lie on some grim floors, haha.

 

[Departed member 294]

Sarah, you are a warrior.

 

[Deany644]

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.

I have Fibromyalgia. I agree with you it is a horrible condition and more needs to be done to help people who are suffering.

 

[Peeltheavocado]

Yep, Heds, me/cfs and fibro (although I’m not convinced, about fibro)

All came on a couple of years after I had my first child.
Apart from my fiancé and daughter I’m very isolated.
One of the worst things about all of it is that many people don’t know what these illnesses are, they assume it’s just laziness and believe they know more and can give better advice than specialists.

It sucks.
You’re. Or on your own.
I’ve been tested for othe things as well, don’t want to go in to too much detail because I’ve been quite open on social media about it. But I’ve had odd things show up in my bloods for over two years and neurology don’t know why.