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]

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.

 

[Oohthedrama]

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.

 

[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]

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.

 

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.

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.

 

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 tit, but nothing hurts as much as dying in the way I was. This is bare able now.

 

[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 tit, 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.

 

[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.

 

[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!!

 

[Itsnotmeitsyou]

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 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.

 

[GiggleBee]

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.

Thankfully I'm quite good at not picking up infections, unless they're ear infections then I get them fortnightly

 

[Itsnotmeitsyou]

Thankfully I'm quite good at not picking up infections, unless they're ear infections then I get them fortnightly

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!

 

[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.

 

[Coconutshy]

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.

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 :/

 

[GiggleBee]

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.

@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.

 

[SunshineDreamer]

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

 

[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.

 

Sarah, you are a warrior.

 

[GiggleBee]

Sarah, you are a warrior.

I second this!