My unexplained illness is ruining my life

OP

Original post by Coffeetime

The only advice I have is to be persistent with this new doctor. Explain everything to him and don't leave until he has a suggestion. I really hope you feel better!

Thank you, I will try my best :biggrin:

unfortunately I'm rubbish at being persistent with people so I might just write a note of all my symptoms with 'FIX ME' in capitals at the bottom :tongue:

Reply 3

Tiger Rag

22

I wonder how much of your depression is because you have this unexplained illness?

Are you keeping a diary and are there any patterns?

Reply 4

username1221364

5

Original post by shinymagpie

Thank you, I will try my best :biggrin:

unfortunately I'm rubbish at being persistent with people so I might just write a note of all my symptoms with 'FIX ME' in capitals at the bottom :tongue:

I am too. I'm a complete coward. Maybe write down what you want to say beforehand?

Reply 5

OP

Original post by OU Student

I wonder how much of your depression is because you have this unexplained illness?

Are you keeping a diary and are there any patterns?

I was thinking this myself. I don't want to say I have depression as I hate self-diagnoses like those, but I definitely have low moods, maybe because I am always tired.

I haven't kept a diary actually but thinking about it, I might try. Always something I could show to my GP if nothing else works. Thanks for that idea :smile:

Reply 6

Bulbasaur

17

I thought it could've been coeliac disease (Gluten intolerance) until you mentioned weight gain - usually this causes weight loss. It's worth noting that your description of your bowel issues sound very similar to IBS, so they may not be related to the others, although they could be. Definitely see the doctors again though, this is quite strange...

Reply 7

Tiger Rag

22

Another thing to consider is whether you actually have more than one illness, rather than just the one illness.

Reply 8

EmmaHalley

You seem to have many symptoms that I had last year!!

Ask for a blood test to check if you need b12 injections. I had CONSTANT headaches, tiredness, dizziness and general run down feeling. This was because I was severely low in the vitamin b12. A simple blood test will find this out. If so, you'll need the injections once a week, then once a month then once every three months. A blood test will be taken once every 6 months to check you levels and how often you need the injections.

Also, for anxiety, (which made me feel really low as well) I was given propranolol which helped and also helps for headaches too.

For the additional weight, do a diet diary and write down everything (even how many sugars are in your tea etc) and after a week you should have a good idea. Take that to the drs for proof too. If you ask for anything like blood tests etc the doctors don't refuse if you stress as if they refuse and you do have something wrong that that blood test could have predicted early and prevented you can sue them.

Hope you find out the source!!

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Reply 9

OP

Original post by Bulbasaur

I thought it could've been coeliac disease (Gluten intolerance) until you mentioned weight gain - usually this causes weight loss. It's worth noting that your description of your bowel issues sound very similar to IBS, so they may not be related to the others, although they could be. Definitely see the doctors again though, this is quite strange...

I also considered this. Annoyingly, I've eaten relatively the same diet for most of my teenage years,and I don't have huge portion sizes or extra helpings,so my weight gain is so frustrating :frown:

I do love minstrels but I don't eat *that* bloody much of them :tongue:

Thanks for your help, I hadn't considered IBS but I might ask for his opinion on it.

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Reply 10

OP

Original post by EmmaHalley

You seem to have many symptoms that I had last year!!

Ask for a blood test to check if you need b12 injections. I had CONSTANT headaches, tiredness, dizziness and general run down feeling. This was because I was severely low in the vitamin b12.

Hope you find out the source!!

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Thanks for this, It's comforting to know I'm not going insane and someone has suffered similar haha! Did you find that with the b12 injections, you had immediate relief from your tiredness etc?

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Reply 11

OP

Original post by OU Student

Another thing to consider is whether you actually have more than one illness, rather than just the one illness.

Oh golly gosh, hopefully it's not multiple
illnesses :frown:

*scared*

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Reply 12

flyyoufools

11

Original post by shinymagpie

... last 2ish years ... complete exhaustion ... headache ... dizziness ... feeling like I haven't slept at all ... low moods ... extremely upset, irritated ... angry, for no apparent reason ... odd bowel movements ... unexplained weight gain ... aching muscles and joints ... zero libido ... eczema in random patches ... anxiety ... symptoms are so random ... underactive thyroid ... exercise is tough ... stops me from doing everyday things ... affecting my relationships ... too tired to join in ... low self-esteem

Sounds like Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome/ME which I have and it sucks. It usually comes up after a viral infection (glandular fever for me, along with on-and-off illnesses as a kid) or ongoing illness or some illness during a stressful time or just stress/over-exhaustion but sometimes doesn't follow anything. If you can remember anything like that before getting ill, tell the GP. The vast majority of those symptoms fit mine (except headaches/dizzines/weight) but the different names I gave are varying forms of the illness that tbh doctors don't understand (e.g. ME is more to do with chronic pain as well). I'm not saying it is CFS/PVFS/ME but it sure sounds like it.

If the GP thinks it is, you'll go through some months of tests (mainly bloodtests with some others) to figure out what's up. If the tests tell them nothing; it's CFS/PVFS/ME. Basically an illness that confuses doctors because the symptoms are obvious and there but they don't understand it and can't treat it.

I had one ****ty GP who I wanted to punch tbh so don't worry about that one person shrugging it off because the other GP I saw who referred me picked up on it and told me what the other GP had said was bs. I'd make a point of emphasising the constant exhaustion, not feeling better after sleep, length of time suffering, mood/anxiety and how it stops your everyday life because those should be warning signs to any educated doctor. I was told that unexplained weight loss was a symptom but definitely mention the gain and your headaches/dizziness too. The 'eczema' thing might actually be eczema or an auto-immune rash that comes with CFS which I have too, painful/irritating/inflamed/random/widespread?

Tell me how the appointment goes? If it is CFS then you might want someone to talk to because I felt hella alone after being told 'hey, you'll have this 6months to a lifetime and we can't help you because we don't understand you' -.-

Reply 13

OP

Original post by flyyoufools

Sounds like Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome/ME which I have and it sucks. It usually comes up after a viral infection (glandular fever for me, along with on-and-off illnesses as a kid) or ongoing illness or some illness during a stressful time or just stress/over-exhaustion but sometimes doesn't follow anything. If you can remember anything like that before getting ill, tell the GP. The vast majority of those symptoms fit mine (except headaches/dizzines/weight) but the different names I gave are varying forms of the illness that tbh doctors don't understand (e.g. ME is more to do with chronic pain as well). I'm not saying it is CFS/PVFS/ME but it sure sounds like it.

Tell me how the appointment goes? If it is CFS then you might want someone to talk to because I felt hella alone after being told 'hey, you'll have this 6months to a lifetime and we can't help you because we don't understand you' -.-

Thanks for the help :smile:

I'm sorry, that sounds horrible :frown:

I will let you know how it goes, I wish I had tried to remedy it earlier in the year as being so exhausted in this hot weather is awful *grumble*

I should add, the only ailments I've ever had were bronchitis when I was a baby, and a few bouts of Tonsillitis, so I'm hoping it's not chronic fatigue after a viral infection :frown:

(edited 9 years ago)

Reply 14

flyyoufools

11

Original post by shinymagpie

Thanks for the help :smile:

I'm sorry, that sounds horrible :frown:

I will let you know how it goes, I wish I had tried to remedy it earlier in the year as being so exhausted in this hot weather is awful *grumble*

I should add, the only ailments I've ever had were bronchitis when I was a baby, and a few bouts of Tonsillitis, so I'm hoping it's not chronic fatigue after a viral infection :frown:

No problem :smile:

It is but I'm learning to cope and there are alternative therapies that I'm trying; it could be worse! Yeah I getcha, I don't usually regret anything, even bad decisions, but I'm finding it hard to forgive myself for this one because I made it worse by ignoring my glandular fever and not giving myself time to heal -.-
It doesn't always come after an illness but that does sound a little hopeful. They did so many tests on me so I'm sure they'll figure it out with you, just be patient because it takes time.

Reply 15

C=N-R

If I were you, I would ask for a FBC with thyroid function test if you haven't done so already. Most of your symptoms are consistent with hypothyroidism, probably something that your GP will overlook but it's worth asking for a referral to see an endocrinologist.

(edited 9 years ago)

Reply 16

OP

Original post by C-Rooney

If I were you, I would ask for a FBC with thyroid function test if you haven't done so already. Most of your symptoms are consistent with hypothyroidism, probably something that your GP will overlook but it's worth asking for a referral to see an endocrinologist.

This is my main plan of action as my Mum seems to think hypothyroidism may be my problem, I'm so scared though as I hear it can be a battle to make them test you in the first place :frown:

Thanks so much for the advice and fingers crossed

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Reply 17

EmmaHalley

I found that after about 1 - 2 days after the injection i felt like i had so much energy and hardly a headache at all. However towards the end of the month a couple of days before I was to get the next injection id feel horrible again.I really needed them every three weeks id say but i think they only do 2, 4 or 12 week intervals when regularly having them. Its something to rule out at least! :smile:

Reply 18

C=N-R