Chronic illness

[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

 

[NitrousOxide]

So sorry to those of you going through difficult health issues. It's not fair at all.

I'm trying to figure out what's wrong with me; constant fatigue, depression, awful drawn-out PMS and periods, itching all over, sometimes randomly blacking out for seemingly no reason. Pretty sure it's my thyroid but the doctor tested for it last year and the results were normal. I'm going for another blood test tomorrow to see if my thyroid has changed and finally have found a doctor who is being helpful. She also told me to have an ECG to track my heart, which I can't believe no doctor has ever suggested before considering I've had chest pains and blacking out for years! Results looked normal, though.

Reading this thread is kind of disheartening because I currently feel a lot of guilt and like I'm lazy (and worry a lot about other people thinking I'm lazy or exaggerating how bad I feel) and can't tell them I'm struggling with a certain illness because I haven't been diagnosed, but it sounds like people still don't take it seriously when it has a name, so I guess a thicker skin is needed! Any tips on how to stop worrying whether or not people believe you?

Take care everyone.x

 

[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.

 

[ntcb]

I have endometriosis, Fibro, ibs. chronic migraine and ptsd my doctor is starting to annoy me she just doesn't listen to me at all... hope all is well

 

[JAM]

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.

 

[GiggleBee]

Hope it helps.

Thank you

 

[Belleeyes]

I had fibro for around 5 years, became basically housebound and needed a stick sometimes to walk.

I tried everything and the pain management clinic basically went oh well we've done everything, you just need to live with it, I was 23. I then found Mickel Therapy which changed my life and I definitely wouldn't have my son without it. (Sounds cheesy, but I could barely look after myself so I personally wouldn't have coped with pregnancy or a child at that point).

I'm now pretty much 100% pain free and manage to get to the gym and run after my 2 year old. When I start to get symptoms creeping back in (It's usually in my hands and then brain fog), I just book a refresher session again and it helps me get back on track.

It sounded like a lot of crap to me when I first read about it, but I was willing to try any thing and it's the only thing that has helped.

This isn't some ad or anything, I know that it's not well known so I just wanted to share my experience in case it was helpful to anyone.

 

[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.

 

[Mrs Cucumber]

I have m.e was diagnosed in 2011, rarely left my bed for a year, fell pregnant and had my son in 2013 and was okay ish, more good days than bad, had my daughter in 2015 and had a couple of amazing years, the last 6 months I feel like I've been hit by a truck again, literally everything hurts and I just sleep.
My son has also been diagnosed with m.e, apparently one of the youngest people to receive a proper diagnosis.

 

[Mayday]

So sorry to those of you going through difficult health issues. It's not fair at all.

I'm trying to figure out what's wrong with me; constant fatigue, depression, awful drawn-out PMS and periods, itching all over, sometimes randomly blacking out for seemingly no reason. Pretty sure it's my thyroid but the doctor tested for it last year and the results were normal. I'm going for another blood test tomorrow to see if my thyroid has changed and finally have found a doctor who is being helpful. She also told me to have an ECG to track my heart, which I can't believe no doctor has ever suggested before considering I've had chest pains and blacking out for years! Results looked normal, though.

Reading this thread is kind of disheartening because I currently feel a lot of guilt and like I'm lazy (and worry a lot about other people thinking I'm lazy or exaggerating how bad I feel) and can't tell them I'm struggling with a certain illness because I haven't been diagnosed, but it sounds like people still don't take it seriously when it has a name, so I guess a thicker skin is needed! Any tips on how to stop worrying whether or not people believe you?

Take care everyone.x

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.

 

[Cariad]

I have vasculitis, a rare chronic autoimmune disease which attacks my blood vessels eyes , skin and joints...I was initially on high dose steroids and chemotherapy since my diagnosis ( fortunately was able to stop the steroids this August, but not after putting on a shed load of weight- sadly still on chemo)
I now have a disabled parking badge as mobility is an issue due to the lasting peripheral neuropathy in my feet...having said that I was able to return to work as a nurse after being off I'll with a horrendous ulcer on my leg ...although I can only work maximum of 3 days / week as I still get fatigued very easily

 

[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.

 

[MelissaCT]

This is awful. I have a chronic condition and am so lucky to have a lovely GP but then living in quite a rural area means they can spend a little more time.
I really wish everyone on here good health. x

 

[leigh213]

I have Gastroparesis and POTS along with chronic gastritis, ulcers and post surgery dumping syndrome and I'm at home all the time and try to work from here, which is why I'm here so much

But I'm glad there's a thread for this, it's helpful to know others are battling the same kinds of things and it gives me willpower to push on.

 

[Deany644]

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.

It enrages me because so many professionals are like to and have no empathy for you. I feel like saying try being for a day and then tell me it is not real.

 

[Dont@me]

Me! I have Cystic Fibrosis which can be quite shitty at times

 

[Mercedes12]

So sorry to those of you going through difficult health issues. It's not fair at all.

I'm trying to figure out what's wrong with me; constant fatigue, depression, awful drawn-out PMS and periods, itching all over, sometimes randomly blacking out for seemingly no reason. Pretty sure it's my thyroid but the doctor tested for it last year and the results were normal. I'm going for another blood test tomorrow to see if my thyroid has changed and finally have found a doctor who is being helpful. She also told me to have an ECG to track my heart, which I can't believe no doctor has ever suggested before considering I've had chest pains and blacking out for years! Results looked normal, though.

Reading this thread is kind of disheartening because I currently feel a lot of guilt and like I'm lazy (and worry a lot about other people thinking I'm lazy or exaggerating how bad I feel) and can't tell them I'm struggling with a certain illness because I haven't been diagnosed, but it sounds like people still don't take it seriously when it has a name, so I guess a thicker skin is needed! Any tips on how to stop worrying whether or not people believe you?

Take care everyone.x

I have PMDD which it may be worth you looking in to if your PMS symptoms are really severe and affect your day to day life when they occur

 

[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!

 

[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 :/

 

[whatamess123]

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.

You are definitely not alone.x I also have Fibromyalgia/fArthritis/degenerative disc disease.All are painful ,but fibro is so debilitating ,so i truly understand how you feel.It`s not just the chronic pain ,which i can experience day and night ,but the dreadful exhaustion and nausea.I come here to take my mind off the nagging pain etc ,i can always find a post or more which make me smile.I`m glad you`ve started this thread.It`s not wanting to bemoan our lot ,just to feel (as you say) less alone.I found out who my true friends were when i was diagnosed ,and ,as time`s gone on ,been unable to keep up with certain people.However ,i`ve also made some new friends who are there in good times and bad..Hope today has been a little kinder to you?Xx

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.

At the beginning yes.Especially the pain clinic specialists ,who seemed to lack any compassion!They gradually ruled out various conditions ,and i saw a wonderful gp who knew exactly what my symptoms were (and this was 20 years ago).It was such a relief to finally feel vindicated ,as they can make you feel such a fraud.I had a sick husband at the time ,and 3 very small children.I kept saying i didn`t have time to feel so lousy ,and why couldn`t they just explain why my joints were swelling ,why i felt abnormally tired ,and constantly hurt ,everywhere.I guess because ,unlike my joint and back problems ,there wasn`t a scan/xray to verify the condition.
Now it`s so widely known about ,in drs surgeries etc ,they seem to have a better understanding.I no longer am dismissed when i ask about burning/aching in various parts of my body .Plus there are very real symptoms ,hot swollen elbows /heels etc. I guess what i`m trying to say is i find there`s more empathy (IF you have the right Dr) nowadays.