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Please help me! I am hurting and struggling

(11 Posts)
Fettuccinecarbonara Thu 06-Jul-17 14:33:58

I'm having a bad time of things at the moment, and if anyone can help me I'd be very grateful. Even just a hand hold as I feel like a fraud.

I'm under the care of the doctor because of the following (gradual onset)
Severe joint pains
Joint aches
Upper back pain
Utter overwhelming exhaustion.
I've put on a fair bit of weight in the last year. But a lot of that is because I cannot exercise.

I also feel like I have a virus coming. I'm cold and shivery though no obvious temperature.

Doctors have taken blood tests which show negative/normal for everything. Though my rheumatoid factor is borderline (whatever that means)

I've had ovaries checked by ultrasound, internal scans and blood tests.

I've been tested for coeliacs as it runs in the family.

I am seeing a rheumatologist soon. If that is negative or borderline with no 'cure' I cannot see what I can do next!

I have a full time job, married with young children. I work full time. I am under 40, but feel over 70.

Thank you for letting me get this off my chest, I moan to DH so much I'd just like somewhere else to vent!

I'll be back later, I have a rare hour to myself (off work) and I'm going to get some kip!

Fettuccinecarbonara Thu 06-Jul-17 14:36:20

Oh I've also had an ultrasound on my thyroid as well as blood tests. But they're normal too.

Banderchang Thu 06-Jul-17 19:07:58

That sounds tough, fettucine, are you on any medication for your pain and fatigue?

I'm a bit similar to you: lots of joint pain and also dental/face pain but all diagnostic tests, blood tests, x rays, MRI etc come back negative.

I am seeing a private gp next week to try to get a rheumatologist referral, as my physio and dentist can't see any reason for all my pain but I am frequently off work with it all.

I also feel very cold, like you, and also very sensitive to smell and certain noises (like several people talking at once).

Not sure which parts of this are connected or if there is a single underlying condition, but I am taking lots of painkillers and my regular gp has nothing to suggest. Last week he told me that we are all on the pain spectrum and to come back in six months if I wasn't better. Since this has been building up for 8 years and is getting worse, I am trying the private option. Maybe we can swap stories?!

Fettuccinecarbonara Thu 06-Jul-17 22:42:54

6 months?! Shit that sounds horrible! I'm so sorry for you.

No, I have no prescriptions. I take ibuprofen when it all gets too much (usually from 4pm onwards!)

Have you had your vitamin levels checked? My symptoms sound very much like low vitamin d, though I'm not deficient.
I take high dose tablets just in case! But they don't really help.

The pain I don't worry about as I know someone could help one day. The tiredness however...

Bettertobehealthy Fri 07-Jul-17 13:10:49

Hi Fettucini

did your blood tests include vitamin D level. If so , what was your level ?

here in the UK , we accept very low levels as 'acceptable' -- however throughout evolutionary time , our species had levels in the 120 - 140 range. Some doctors won't even treat levels of 25 - 49. Your symptoms may ....I stress, may be due to low Vit d , . here in the UK, we have very weak sunlight , we avoid direct sun , we use suncreams which prevent absorption of UVB light and so cut down vitamin D production. There is practically no Vitamin D in a normal diet , unless you consume lots of oily fish . some meat contains some metabolites , very little , but vegetarianism will not give you much at all. Are you vegetarian. ?

Have a look at this thread below , and see if you recognise yourself here , lots of people with low vit d , how it affected them , how they felt when getting treatment , what levels they were at etc.etc.

Hope this helps , best of luck


Bettertobehealthy Fri 07-Jul-17 13:15:11

Sorry , I did not read you last post carefully , .... BUT , what levels were you? , and what do you call a high dose ...? AND crucially , have you had your level measured after you have been taking your vit d supplement for a couple of months or more. Some people do not respond very well to supplementation , possibly because they cannot absorb by the method being used. . ... ! There is a 6 to 1 variability in response .


Fettuccinecarbonara Fri 07-Jul-17 20:52:11

I've no idea what my levels are!

I had one test about 6 months ago.

Was told I was deficient. Take 20,000iui per day.

I've not had a retest! Thank you, I really really hope it's that easy to cure

Cocolepew Fri 07-Jul-17 21:00:22

Have you ever had a facial rash or redness across your nose and cheeks?
Your symptons could point to an auto immune disease.
There is an auto immune board now if it helps.

Mymouthgetsmeintrouble Fri 07-Jul-17 21:06:25

Have the doctors mentioned fibromyalgia your symptoms match up but obviously other causes need investigating too

Fettuccinecarbonara Fri 07-Jul-17 21:12:08

Doctor's mentioned neither of these.

The 'good' news is ive come down with tonsillitis today.

So the fevery feelings etc can be attributed to that.

The hideous aching pain is still there though, along with weakness.


Fettuccinecarbonara Fri 07-Jul-17 21:13:19

Oh and no rash.

I used to get acne and went on roaccutane which rendered me almost bedbound with joint pain. But no one seemed to care, just raised their eyes and said it was an unusual side effect.

I've been stiff since then. Though it's ramped up recently

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