Feeling tired, odema, put in a stone in a month, breathless. Gp insists I am fine.

[IncessantNameChanger]

I have felt exhausted for years. 7 at least. I have been going to the doctors about it for years and I always get brushed off. I told them three years ago I thought I had sleep apnea but that was ignored four times before I was referred to a online insomnia course. Luckily the insomnia team quickly realised that someone who sleeps 12 hours a day, fell asleep in soft play and almost at the wheel dosent have insomnia. I got referred via them and diagnosed with apnea. I have cpap.

It made me feel much better but I was never 100%. So I keep asking the gp every few months, get poo poo'ed etc on a endless loop.

This month I have put a stone on. I wake up with legs that feel like they will split open from swelling. I went to the gp again but as I had all the symptoms of heart failure I was seen. Breathless, exhausted, arms burn just hanging out washing. Odema everywhere. Had bloods and a chest xray. But all the results have come back clear so its case closed again.

My odema is so bad I have been wearing surgical stockings and only drinking a pint of water max a day.

My pee is still light in colour so I'm clearly not dehydrated on the third day. I never feel thirsty. In two days I have lost 4lbs presumably of water.

I just dont know what to do. I'm seeing a neurologist as I have weird nerve pain / numbness and have just failed a nerve conduction study ( I'm presuming as I am carrying a extra stone or two of water. So I might beg him to re refer me to someone. I would at this point go private but they told me years ago on this matter I need to see a consultant ( but what type of consultant? I dint know what's wrong).

I have a disabled child and I cant properly care for him like this. If I kneel down I feel like my legs are going to split down the middle.

How do I deal with my gp? On paper things look ok ( not sure on these last tests as not seem them. Thyroid is 5.5 ish. Same for cholesterol. Almost pre diabetes but not quite. Iron low but in ok range). So nothing abnormal but nothing failing any of the tests either.

If a private gp said my thyroid was too high how could I convince my gp anyway? I feel so hopeless.

This is my hand. Its been this swollen for many years now

So glad your latest experience with the GP was a good one. Best of luck

I’m so glad someone took you seriously. The albumin reading is why I said your dip looked iffy to me. I have a kidney condition that causes me to leak albumin, when I have a relapse oedema is one of the signs it’s all going wrong - along with frothy urine.
Hopefully they’ll get to the bottom of it now, good luck!

Just to update a bit more. I now have tests coming out of my ears. Still no wiser as that is going on.

So far my vitamin D is a bit low, my creatine is a bit high. I'm waiting for my third blood test, ecg and another MRI and more nerve conduction tests. That's not all of the tests either. I have been referred for councilling as it's a lot of test in a short space of time.

Just goes to show how much Gps can vary. I have been brushed off for so long by multiple gps. I just wish someone had listened sooner. It's really hit me this week how low my quality of life has got with no energy

Really glad you've been taken seriously now.

Ask for a second opinion with a different GP. Get a private Gp if you can afford it (usually about £150)

Hi, OP. I was caught up in a whirlwind of tests last year, and have another batch coming up. It's exhausting. I also had talking therapy and it was via zoom so quite easy to do.

Btw, I am one the many people who test negative for inflammatory markers, but who definitely has autoimmune inflammatory disease(s). Some of us are just weird like that!

Wishing you well

Do you have a list of the medications you are taking regularly?

You've probably heard it a million times before but losing weight will improve your energy levels, and might improve some of the swelling if your heart isnt having to work as hard

I'm only on labetol regularly. I was on steraline but came off in April. I take the odd swig of peptac as I had silent reflux at night.

My inflammation markers seem normal and the neurologist has mentioned fibromyalgia but I'm not really in pain. It's weird nerve pain and muscle fatigue on exertion ( well walking more than a few metres).

If everything comes back normal I'm going to join the gym. Right now I'm still scared it's my heart so I'm nervous to take up more exercise until my ecg and leg doppler.

I feel quite teary all the time now. I guess it's easier to minimise when your being dismissed

I think you need an echo as well, a scan of your heart.

Has anyone mentioned something auto immune related? I have Scleroderma and have a lot of your symptoms. The skin feeling like it its so tight it could split is a big marker. The breathlessness and odema could be the lungs and heart hardening, which i have. Ive attached a pic of my swollen hands to show you how like yours they are. Its a rare illness and often takes years to get a diagnosis. Have a look at the SRUK website and see if you recognise anything familiar.
www.sruk.co.uk/

Just to update.

I was never reffered for a ECG. I phoned the hospital and they confirmed yesterday they haven't got a referral for me.

I chased up the fatigue clinic and another gp said the criteria is a very high bar so try via my apnea clinic.

I had a creatine kinase result of 230 and the original gp was was asking about muscular dystrophy and I had it re done. My normal gp said it was then fine and that's that.

Still got about 2 stone of excess water. Still exhausted. Still dizzy and breathless.

Not sure what to do next. I might try fasting as much as I can after half term to see if I can loose some of this weight I have suddenly put on.

I'm back to the start and the only thing I can think of is losing weight. But I'm convinced its mostly fluid.

Could your GP consider a diuretic like Furosemide?
I do hope you get some answers and treatment
Daily life must be a struggle

Meant to add, raised Ck could also indicate Addison's disease or Cushing disease which are disorders of the endocrine system

My gp has washed their hands of it now. They said they wont reffer me to the fatigue clinic now. My gp said my creatine is normal but I haven't seen the numbers. No explanation of why it was three times its upper limit either.

No offer ever of diuretics. My kidneys are fine so it's not a issue. Except my ankles are swollen painful and tight I cant prove that. I had to wear my surgical stockings just to be bearable

Update. My chest xray and bloods was all ok in the end. My creatine kinase was 230 but on a redraw the gp said they was ok. Leg doppler ok. So that was that and nothing more was done. I never had the ecg.

I was told I would be reffered to the fatigue clinic but that didnt happen either. I put a complaint in as heart failure was mentioned so nice guidelines says that warrants ecg.

So I still have all the symptoms but no more input from the NHS. I had a heart echo and a MRI I am waiting on but if they are both clear that's it.

I'm worried I'm going to be diagnosed with fibro of Cfs but as a half arsesed diagnosis.

Not sure what to do next. Private is a option but I have no starting point as no idea what consultant I would need to see

I'm so sorry you have been treated so dismissively
They have not followed the Nice guidelines re heart failure
How is your Oedema? At the very least they should've tried a diuretic, such as Furosemide.
You shouldn't have to see a private consultant, but as you're still unwell if at all possible I would seek a consultation with a Cardiologist then go from there if the MRI
Fibromyalgia is a diagnosis of exclusion when all other tests have shown nothing and my gut feeling is they are missing something here
I feel for you and do hope you get some answers

MRI is clear

Book in with cardio privately, you will get moved to another private consultant if necessary. In the meantime lose weight it's not all water but you know that

As soon as I know the ecg and echo dont indicate a imminent heart attack the next thing is to loose weight and join the gym.

I had nerve pains but so far no indication my spinal cord is damaged so that's what made me stop exercising. I'm half scared I might drop dead if I push myself.

But I think if I lost some of the water too I wouldn't be so out of breath. I went swimming in half term and it really hit my how heavy I am after a hour in the pool.

Just seconding scleroderma as a possibility -my aunt had this and her symptoms were exactly the same as yours. Her hands looked like yours too.

It is rare, so you would need to push the GP for referral.

@IncessantNameChanger

Update. My chest xray and bloods was all ok in the end. My creatine kinase was 230 but on a redraw the gp said they was ok. Leg doppler ok. So that was that and nothing more was done. I never had the ecg.

I was told I would be reffered to the fatigue clinic but that didnt happen either. I put a complaint in as heart failure was mentioned so nice guidelines says that warrants ecg.

So I still have all the symptoms but no more input from the NHS. I had a heart echo and a MRI I am waiting on but if they are both clear that's it.

I'm worried I'm going to be diagnosed with fibro of Cfs but as a half arsesed diagnosis.

Not sure what to do next. Private is a option but I have no starting point as no idea what consultant I would need to see

For private consultants you still need a referral from your GP. So as they are not taking it any further you may not be able to see someone that easily.

I'm just worried that as the bloods was ok the symptoms are dismissed.

I'm under neurology for the nerve issues and he has mentioned fibro. He doesnt know my history and has never met me ( just talked on the phone once and he has seen my mri). Even he thinks there is a possible reason for symptoms. Gp cant see past my bloods. Sleep clinic team think its alarming and walked me to the heart tram reception desk in the hospital. Gp thinks nothing. No opinion. Nothing at all. It's so frustrating.

I have councilling starting this week set up by the gp surgery for possible heart issues but I have nothing to talk or worry about as I have no idea what's going on.

My only hope is losing weight cures everything. I'm thinking of having a gastric balloon fitted privately to speed up weight loss. I'm just lost and a bit desperate.

@IncessantNameChanger

I'm just worried that as the bloods was ok the symptoms are dismissed.

I'm under neurology for the nerve issues and he has mentioned fibro. He doesnt know my history and has never met me ( just talked on the phone once and he has seen my mri). Even he thinks there is a possible reason for symptoms. Gp cant see past my bloods. Sleep clinic team think its alarming and walked me to the heart tram reception desk in the hospital. Gp thinks nothing. No opinion. Nothing at all. It's so frustrating.

I have councilling starting this week set up by the gp surgery for possible heart issues but I have nothing to talk or worry about as I have no idea what's going on.

My only hope is losing weight cures everything. I'm thinking of having a gastric balloon fitted privately to speed up weight loss. I'm just lost and a bit desperate.

I'm not saying there is or isn't anything wrong. I don't know you. I'm saying that you may not be able to see a private doctor without a GP referral.

Also you are clearly worried - about what is going on. That alone could be causing some of your symptoms as feeling dismissed can make you feel anxious about not knowing what's wrong etc so could well be exacerbating things.

I'd go private if you can afford it, the GP sounds so dismissive.