Undiagnosed illness and ESA

merlin68

It took me 30 years to be diagnosed and i had drs telling me it was all in my head. I took a list once of all my symptoms to gp, who said thats a long list and told me it was anxiety.
It was only because my sister was diagnosed with eds, that i looked it up and thought wow thats me.
Hence referrals to rheumy and orthopedics and now have my answer.
Eds with osteoarthritis and cfs.
EDS can cause lots of different symptoms main ones being pain and hypermobility. Hence my questions.

Kayslay

Hello guys.

Reading symptoms of CFS I think I may have it!

Too many people give me the advice that I should exercise but what they don't understand is every single time I try I get flu like symptoms moments later and feel dizzy/light headed.

My GP says it could be ibs. I've taken many different probiotics over the last 6 months but none have had any effect.

I've never been a believer in alternative medicine but I'm really thinking about seeing a naturopathic practitioner now.

Kayslay

Also guys need some advice.

I sent off a fit note 4 weeks ago, it was a week later from when the last one finished. I have not received any notifications/letters or any money. What can I do?

merlin68

Have you not thought of ringing them. The fit note could have been backdated.

Kayslay

merlin68 wrote: »

Have you not thought of ringing them. The fit note could have been backdated.

I don't think it could have been as I joined a new gp surgery.

I've been meaning to give them a call but I'm really nervous about this kind of thing

Kayslay

bll78 wrote: »

Hi I can't help with the ESA bit but may be able to with the other bits.

For the colonoscopy mild erythema literally means red patch (sometimes asscoiated with coldsore virus). They took a sample and found no cause for it. This could well be a red herring if you think about your skin a mild red patch may mean nothing.

As for the gallbladder theory it doesn't really fit the symptoms. I had a gallstones and one stone was the size of a malteser. The main symptom was acid/indegestion and reflux after eating (especially anything with fat). When the gallbladder became blocked I was in agony and passing white stools. I never had brain fog or abdo pain similar to the type you describe.

I do however have IBS and the symptoms except brain fog seem similar. I do get brain fog though with another condition when I'm exhausted. Are you sleeping ok?

I would suggest that the GP is unlikely to fund anymore tests as you've had thousands of pounds worth with nothing discovered. I can understand why a GP is now saying no more fit notes as there's nothing but what you say as evidence, and anything too serious would have been found by now in the blood test scans etc..

At lot of people have undiagnosed conditions I myself have had one for 16 years but the tests results are positive it's just the combination of problems that won't fit under a diagnosis. So benefits agencies have something to work with.

I can't see how a private gastroenterologist will be able to do much more even if you pay. Whatever the issue is, it isn't getting worse (i.e after all these months you've never ended up in hospital). Therefore I think it might be one of these things you just have to learn to deal with. Getting a job may help a bit. I'm disabled but work, and find being occupied does me the world of good. Who wants to sit around all day worrying?

If god forbid it does get worse then the benefit will be there will be something there for the GP to see. However by then you may be trapped at home, so whilst you can go out and enjoy yourself, and try not to dwell on it too much.

Hi sorry I never got around to replying to you earlier.

I've read many reports online where people have dysfunctional gallbladders with no gallstones. A lot of people's gallbladder doesn't eject enough or too much gall. The only way to discover that is through a nuclear gallbladder hida scan.

The reports I've read the patients have all had normal ultrasound, blood test, x rays but failed the hida scan.

I've requested to have the hida scan but my GP refuses and says if there was anything wrong with your gallbladder the ultrasound would've shown.

I'm really frustrated I'm thinking of doing the hida scan privately but it's a lot of money in case it turns out my gallbladder is fine.

Kayslay

I have to go in and get another sick note from my doctor. One of the things I hate doing the most. I'm really nervous about asking for one.

My old gp used to ask "why should I give you one?" I'm not the confrontational type so I'm not normally one to argue. I'm a little scared about asking for one if I'm totally honest.

jamsponge

Have just read your thread and it seems you have found some unsympathetic doctors. Unfortunately when you don't fit into a category you get a label such as yourself as being anxious.
Have you thought that it might not be your stomach that is the the problem. We sometimes get referred pain so it could be another part of your body that is the problem.
What about changing your diet. There is a very good one called the fodmap diet where you cut out alot of foods for a number of weeks then reintroduce things to see if they are a trigger.
I have fibromyalga which took alot of years to get a diagnosis but again its just a label. Do whats right for you. I do think though you need to find a better GP.

Kayslay

jamsponge wrote: »

Have just read your thread and it seems you have found some unsympathetic doctors. Unfortunately when you don't fit into a category you get a label such as yourself as being anxious.
Have you thought that it might not be your stomach that is the the problem. We sometimes get referred pain so it could be another part of your body that is the problem.
What about changing your diet. There is a very good one called the fodmap diet where you cut out alot of foods for a number of weeks then reintroduce things to see if they are a trigger.
I have fibromyalga which took alot of years to get a diagnosis but again its just a label. Do whats right for you. I do think though you need to find a better GP.

As with everyone else who replied I genuinely appreciate your input.

I'm not counting anything out I've thought about that too.

My diet is clean, I have been taking vsl3 probiotics which cost £70 per course, I eat a lot of fermented food which I make at home e.g sauerkraut, Kefir, kimchi etc.

How did you finally get your diagnosis?

I'd do anything to feel mobile again I don't even care about being 100%, I just want to be able to go out, exercise and work.

Kayslay

Dear Lord today the pain is unbearable, worst day since I've because "ill"

See the thing is I can't show doctors these, they judge me with what they can see in the 10 minutes appointment time.

One thing which really ticks me off is when they keep INSISTING that I only get pains when involved in an anxious situation. I explained several times that is not the case. Like today it's a sunny Sunday I wanted to relax but have been in excruciating pain all day and there's nothing I know of that can even give me temporary relief.