Andover Fibromyalgia & ME Community Group

Struggling to work it out!

Hi,

First time posting here, but left with no other options.

I have visited the GP for 7 month and been told I suffer from anxiety, however to me. I know my body and I don't think it is that.

I have dull aches pains all over my body, blurred eyes, headaches tired all the time and sometimes struggle to stand up for longer than 5 minutes, I get really warm to the point of where I get heat rashes. I have pains in my chest, neck, back, shoulders, legs. I also feel sick after eating and bloat up to the size of a whale!

I got diagnosed with IBS 4 years ago now, so I struggle to go and sometimes go to often.

I have awful pains in my stomach (under ribs). I hit my leg on the side of my bed, which was only gentle however it killed and cut me and bruised me. However I don't have problems sleeping as I sleep too much!

My step mum suggested I may have fibromyalgia, however doctors fob me off for 7 months.

Just don't know what to do anymore. I'm back at the doctors to discuss further on Thursday, they recently tested me for Vi D and Diabetes

Thanks for any help

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I was diagnosed with severe anxiety in 2009 at that time I was told all my stomach and back pain and stiffness was due to IBS. Then I got shingles and then some marker test showed up inflammation and the doctor said Fibro and stuck me on cymbalta best year and a half and then my body rejected it. Usually Fibro starts with anxiety and IBS not always but.....ask your doctor for a referral to a Rheumatologist.

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My doctors have rang about blood tests they said low on Vi D but nothing prescriped just advise sheets printed! Still seeing them on Thursday either way

Thank you

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How low is the Vit D did they tell you? :)

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They said it’s at the lowest of the scale. They have now given me vit d tablets after I had a go at them!

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Sometimes they like to fob off younger people as they think we are ill!

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Welcome to the AFMCGUK Community! :)

I can completely empathise with you as I remember how frustrated I was that the GP seemed so dismissive of my symptoms and didn't really want to listen especially when each test appeared normal. It must be hard trying to explain to your GP that it is not your anxiety causing your concerns and I suppose the more your protest it seems you protest to much as the saying goes. It seems like you cannot win, can you?

I would consider the following three options;

* Seeing another GP in the Practice

*Asking your GP for a referral to Rheumatology, if s/he refuses to refer you then ask that your request be noted in your medical notes and the reason why it was declined. In case you need to refer to it later with any further action ie complaint

* Write to the Practice Manager to discuss the situation and how you feel your medial needs are not being addressed.

You have a range of symptoms and it really sounds to me like you need a referral for a full range of tests, as some sound like Fibro and others not so much. Of course, it is possible to have a primary condition with Fibromyalgia as a secondary diagnosis, meaning the main illness may have triggered Fibro as well.

As a newbie, I've noticed you haven't locked this post to the community and this means it is open to be read by anyone on the internet. Locking it means that only the first few lines can be read, here's the link to do this;

healthunlocked.com/afmcguk/...

I sincerely wish you all the best and please do pop in to keep us updated about how you are getting on

Emma :)

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Hi ToniB95.

Just wondering if you have had your vitamin B12 levels tested?

IBS is one potential cause of absorption problems and those with IBS often suffer from B12, folate, ferritin and vitamin D deficiencies.

Vitamin B12 deficiency is often mis-diagnosed as fibromyalgia (and other things too) so worth checking out - the symptoms you describe do ‘fit’ B12 deficiency - but many other things too - unfortunately.

Pernicious anaemia - an autoimmune condition - results in B12 deficiency - so worth following this up too.

Agree with those who suggest referral to a rheumatologist - also ask GP to do antibody screen - your symptoms could be due to range of autoimmune conditions - more likely if anyone in your family has an autoimmune condition.

It's really tough getting doctors to investigate health issues properly sometimes. Sadly. So be persistent...your GP should really be trying to help you.

Good luck 👍

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I have been tested for b12 and all normal apparently. It’s took them 7 months to get to here!

Thank you

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Hi ToniB95. Doctors often say B12 is 'normal' when it's not, it's possible to have B12 deficiency even if levels are within the 'normal' reference range, and the serum B12 test is notoriously unreliable at detecting B12 deficiency (for various reasons). All the guidelines state that the clinical picture (the presence of symptoms) is more important when assessing B12 status, rather than simply looking at serum B12 levels. And you are a high risk of B12 deficiency because of your IBS (one of the known causes of B12 deficiency).

Might be worth having a read through the information below and then approaching your GP again if you think you 'fit' the B12 deficiency profile.

Signs and symptoms of B12 deficiency: b12deficiency.info/signs-an...

onlinelibrary.wiley.com/doi... in Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

stichtingb12tekort.nl/weten... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

Sorry if you think I'm banging on about this but in the PAS forum we see so many people who are repeatedly told by doctors that their serum B12 levels are 'normal', only to then discover that they do indeed have B12 deficiency. And if you do have it and neurolgical symptoms are present, the it's important that treatment is commenced as soon as possible to enable optimum recovery (and prevent potentially irreversible neurolgical damage).

We also see many people who are mis-diagnosed with fibromyalgia and then don't receive the treatment they need. Of course, it's also possible to have fibromyalgia and B12 deficiency...and B12 injections have been shown to be helpful to some who have fibromyalgia) 😉.

Good luck and I hope you find some answers soon.

👍

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Hi Hun,.

sure sounds like it to me!! Drs do fob off... Could ask to test fibro pressure points and how many react....

I was fortunate, I was diagnosed by specialist... I have a small homopathic spray...Nausmed that helps with nausea...and I feel much better when taking a good multivitamin & a stress suppliments!! Rest and relaxation are important...but so is gentle excercising... Google may help with useful excercising!

I haven't been able to go off sugar and gluten.... Tho I believe it does make lots of difference!!

Hope that helps some...can be a tough road... Getting good sleeps important to...poor sleep may be reason for having it...!!!!

Blessings aplenty...nanajude

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Thank you! I’m going to surely look into it, it’s just a nightmare not knowing what’s wrong

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Hi,

sorry to hear poor treatment at doctors, really hope you don't have it but sounds like it with your range of symptoms & I sleep well so we don't all suffer with ipoor sleep, good luck, hope you get correct diagnosis & treatment.

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