Hi - Need reassurance? I've tried every other disease! :P
Posted: Tue Aug 07, 2012 7:04 am
Hi,
I'm really at the end of my tether with my health - to be honest, for the past few months I've been avoiding the GP etc because it's just an endless mess....and some days I begin to think it must all be in my head
I'm a 25 yr old mum of three..my doctors and I have run from early onset COPD to Lupus to... a sort of dead end of nothing.
Along the medical journey of the last two years I have been officially diagnosed with:
Alopecia areata (I go bald on and off)
Raynaud's phenomenon (if I get cold/stressed/upset my hands and feet go completely numb, turn white, then go bright red sometimes hours later - then tingle for hours and hours. Sometimes I get pins and needles in weird places for no reason)
Ehler's Danlos syndrome - my joints badly subluxate, wobble and dislocate - I have throughout my life dislocated nearly every joint in my body - my right shoulder is the worst for frequency, but the ankles are the most horrible. I have to use a walking stick, no one is treating me for this because the joyous UK NHS forgot about me.
Endometriosis (oh, fun times!)
Unconnected: severe post natal depression 4 years ago.
My unanswered symptoms are:
Being highly vulnerable to sunlight (I'm a vampire basically ) I get hives in the sun. Have to wear factor 50. I also burn at the drop of a hat. Hot weather also makes me feel incredibly fatigued/ill.
Fatigue!!! Quite often. So tired. Sometimes I just have to sleep. It just happens whether I want it to or not. My brain turns to mush and my words slur.
Fibromyalgia type pain - like having massively over exercised the day before - all I need to do is bend over oddly the day before and I will feel that I've done 500 sit ups. I used to be an exercise nut - not any more my legs and upper arms are the worst. I get swelling and tenderness too.
Strange skin rashes on my face and chest. Including like little hard white spots that I just can't help but squeeze and then get infected (sigh!) and the 'Lupus' rash - a redness across my cheeks and nose, esp in the sun. (For some reason my docs are most interested in this and have sent me to a dermatologist. Rather than anyone else!!!!!)
A 7 month chest infection, which was very serious - I was diagnosed with early onset COPD due to it, then undiagnosed and diagnosed with Lupus Pneumonitis, then undiagnosed due to a negative ANA test. It's not asthma. They don't know what it is - I suffer very badly with recurring chest infections (but this was the worst) and I have 70% of the lung capacity I should (no one knows why). Xrays clear. They're gradually getting worse and terrifying me.
Recurring muscle cramps - usually calves and feet but sometimes all the way up to my bum! And around my chest. I thought at first it was my rib cage wobbling due to joint condition but I think it's purely muscular. It's intensely painful - usually brought on my laughing/sneezing/coughing (great with a chest infection!!!) it passes quite quickly, maybe 5 minutes, but it's agony. All I can do is gasp for breath and frantically rub at myself, it feels like a mixture between an intense tightness and the feeling of my muscle ripping apart.
Blurry vision that comes and goes, spots and stars in my vision - light twinkling white lights, that come and go.
Shaking hands and arms. Sometimes my hands twitch and I end up cutting a finger with a nail from my other finger because they just twitch off on their own, I just scratched my own face earlier instead of brushing my hair over my ear (I need to trim my nails obviously!!!!) When I'm overtired my hands shake uncontrollably, and sometimes even jerk around. Jerky body movements - sometimes when I'm walking my legs don't seem to quite do what I want and I'm a bit shambolic
Vertigo and dizziness - to the point of being accused of being drunk when I went to pick up my daughter from nursery once
Sometimes my jaw jerks and I spit a little by accident sometimes it feels like there's something stopping me swallowing properly.
IBS - it's either all one kind of not good, or the other!!!!!!
This last one is weird - recurring mastitis - 2 weeks prior to my period my breasts swell up three sizes and I can't bear them being touched, they go red hot too. It's horrendous.
****
When I look at the list, it all seems so huge. I've already struggled so much to get my doctors to listen, and once the Lupus was wiped off the slate with the tests they've decided due to my past of post natal depression that it must be all in my head. Sometimes I begin to think it is but then I think...there's no way I could have all these obviously physical symptoms...!!!
Does anyone have any advice on getting my GP to listen? I'm afraid to even go right now. I had a nurse at a drop in centre accuse me of having Münchhausen's after reading my notes (not by proxy, for myself!!) she ordered an NHS taxi to take me for a psych review, but a locum GP stood up for me (she said panic attack and that I was clearly nuts, we said it was part of my lung problem and I needed a nebuliser) I've just...become really afraid of ending up in a psych ward!!!!!!
Not sure what to do, where to go, I was convinved it was Lupus, but now I'm worried it doesn't quite fit, and if it doesn't...well where do I go from here? My quality of life is getting pretty low, and I'm trying really hard to look after my kids and get on with getting on...
Thanks if you got to the end
I'm really at the end of my tether with my health - to be honest, for the past few months I've been avoiding the GP etc because it's just an endless mess....and some days I begin to think it must all be in my head
I'm a 25 yr old mum of three..my doctors and I have run from early onset COPD to Lupus to... a sort of dead end of nothing.
Along the medical journey of the last two years I have been officially diagnosed with:
Alopecia areata (I go bald on and off)
Raynaud's phenomenon (if I get cold/stressed/upset my hands and feet go completely numb, turn white, then go bright red sometimes hours later - then tingle for hours and hours. Sometimes I get pins and needles in weird places for no reason)
Ehler's Danlos syndrome - my joints badly subluxate, wobble and dislocate - I have throughout my life dislocated nearly every joint in my body - my right shoulder is the worst for frequency, but the ankles are the most horrible. I have to use a walking stick, no one is treating me for this because the joyous UK NHS forgot about me.
Endometriosis (oh, fun times!)
Unconnected: severe post natal depression 4 years ago.
My unanswered symptoms are:
Being highly vulnerable to sunlight (I'm a vampire basically ) I get hives in the sun. Have to wear factor 50. I also burn at the drop of a hat. Hot weather also makes me feel incredibly fatigued/ill.
Fatigue!!! Quite often. So tired. Sometimes I just have to sleep. It just happens whether I want it to or not. My brain turns to mush and my words slur.
Fibromyalgia type pain - like having massively over exercised the day before - all I need to do is bend over oddly the day before and I will feel that I've done 500 sit ups. I used to be an exercise nut - not any more my legs and upper arms are the worst. I get swelling and tenderness too.
Strange skin rashes on my face and chest. Including like little hard white spots that I just can't help but squeeze and then get infected (sigh!) and the 'Lupus' rash - a redness across my cheeks and nose, esp in the sun. (For some reason my docs are most interested in this and have sent me to a dermatologist. Rather than anyone else!!!!!)
A 7 month chest infection, which was very serious - I was diagnosed with early onset COPD due to it, then undiagnosed and diagnosed with Lupus Pneumonitis, then undiagnosed due to a negative ANA test. It's not asthma. They don't know what it is - I suffer very badly with recurring chest infections (but this was the worst) and I have 70% of the lung capacity I should (no one knows why). Xrays clear. They're gradually getting worse and terrifying me.
Recurring muscle cramps - usually calves and feet but sometimes all the way up to my bum! And around my chest. I thought at first it was my rib cage wobbling due to joint condition but I think it's purely muscular. It's intensely painful - usually brought on my laughing/sneezing/coughing (great with a chest infection!!!) it passes quite quickly, maybe 5 minutes, but it's agony. All I can do is gasp for breath and frantically rub at myself, it feels like a mixture between an intense tightness and the feeling of my muscle ripping apart.
Blurry vision that comes and goes, spots and stars in my vision - light twinkling white lights, that come and go.
Shaking hands and arms. Sometimes my hands twitch and I end up cutting a finger with a nail from my other finger because they just twitch off on their own, I just scratched my own face earlier instead of brushing my hair over my ear (I need to trim my nails obviously!!!!) When I'm overtired my hands shake uncontrollably, and sometimes even jerk around. Jerky body movements - sometimes when I'm walking my legs don't seem to quite do what I want and I'm a bit shambolic
Vertigo and dizziness - to the point of being accused of being drunk when I went to pick up my daughter from nursery once
Sometimes my jaw jerks and I spit a little by accident sometimes it feels like there's something stopping me swallowing properly.
IBS - it's either all one kind of not good, or the other!!!!!!
This last one is weird - recurring mastitis - 2 weeks prior to my period my breasts swell up three sizes and I can't bear them being touched, they go red hot too. It's horrendous.
****
When I look at the list, it all seems so huge. I've already struggled so much to get my doctors to listen, and once the Lupus was wiped off the slate with the tests they've decided due to my past of post natal depression that it must be all in my head. Sometimes I begin to think it is but then I think...there's no way I could have all these obviously physical symptoms...!!!
Does anyone have any advice on getting my GP to listen? I'm afraid to even go right now. I had a nurse at a drop in centre accuse me of having Münchhausen's after reading my notes (not by proxy, for myself!!) she ordered an NHS taxi to take me for a psych review, but a locum GP stood up for me (she said panic attack and that I was clearly nuts, we said it was part of my lung problem and I needed a nebuliser) I've just...become really afraid of ending up in a psych ward!!!!!!
Not sure what to do, where to go, I was convinved it was Lupus, but now I'm worried it doesn't quite fit, and if it doesn't...well where do I go from here? My quality of life is getting pretty low, and I'm trying really hard to look after my kids and get on with getting on...
Thanks if you got to the end