To think I am being fobbed off?

[GenghisCalm]

Hi,

I have been back and forth from the Doctors for months and have had loads of standard blood tests (none of them have shown anything wrong). I am always bone tired, have achy joints and have a constant sore throat.

Today I have just been diagnosed with "systemic exertion intolerance disease". The doctor gave be a pack of leaflets and the offer of antidepressants which I declined. When I got home and read the leaflets this is now the new name for M.E. and it is a case of nothing can be done and in most cases it goes on its own.

A.I.B.U. to think that I am being fobbed off with a "named illness" and offer antidepressants because they think that it is all in my head when I truly feel ill all of the time?

So you wanted a diagnosis, you got one but think it's wrong? What do you suggest? ME is a real thing, as are lots of different chronic illnesses which may or may not have an actual cure.

Have you read this www.meassociation.org.uk/about/what-is-mecfs/

Thank you I am going to read everything on this site.

I am glad that I know what is wrong and I know that it is very selfish but I was hoping for something easy like a vitamin deficiency where a dose of vitamins would cure it.

I was just a bit shocked when they offered antidepressants as I assumed (wrongly) that they are for depression only and to take time off work if I am too tired.

I am being a twat! I just wanted a course of vitamins or antibiotics and to be back up and running next week.

Thank you again for being the one to point me in the right direction.

Dot be daft, I think anyone with a diagnosis of a chronic condition wants something easily cured with a round of antibiotics and and a cold compress!

It's shitty but you at least you have a name for it. If you get any other symptoms not on the list so to speak then you can go back.

I was prescribed a drug that is also used as an anti depressant for my chronic pain, so they do have other uses :)

At least you have a diagnosis now and can figure out whether there's anything that can help you. It may be right. It may be wrong. But at least you're a little bit further in figuring it all out :)

If the antidepressant is amitriptline(sp) it is very good at helping with pain.
I hope things get easier for you.

I was given anti depressants as treatment for another condition. It's not that unusual.

I totally get where you are coming from. I was diagnosed with a condition there is no straight treatment for. Some work for some people, some people don't find anything that helps.

I was convinced it was wrong for a while. But it was really that I didn't want to accept it.

My DM has a painfull chronic health condition and takes antidepressants as part of her pain management. They have made a huge difference to her quality of life.

If it's amitriptyline it is almost exclusively used for pain these days as there are newer antidepressants with less side effects. The doses are different- 70mg+ as an antidepressant, 10-50ish mg as a pain killer/mild sedative.

Yabvu to class ME as a made up illness. It can be exceptionally debilitating.

Yabvu to want a diagnosis and treatment and then through it back in the face of your GP and have wasted precious NHS resources.

I'm on amytriptaline for insomnia, so different classes of drugs really do have different uses.

Please give the ADs a go. Depression doesn't always manifest itself how you think it might. My main symptom of 'depression' is fatigue and achiness. Sertraline has been a game changer for me. If they don't work then keep searching for support but don't dismiss them without giving them a go. Depression doesn't always manifest itself how you think it might.

Also want to add, I too went a long and demanded blood tests, thinking I must have anameia or a thyroid problem or something, and I was also gutted when all my tests came back with normal levels, so I do understand that.

Easiest AIBU ever.

One post in an the OP concedes she's BU and will go away and read up and do as the doctor prescribed

I felt exactly the same way when (wrongly) diagnosed with fibromyalgia. I just wanted a magic pill that would instantly make me better not a year of amitryptiline and being told to rest. I think it's very hard to accept.

It later turned out I had post-viral syndrome and after 1 year of feeling like you described I recovered.

Thank you all.

I was a being an unreasonable twat yesterday, today I am just a twat.

I can honestly say that I had never heard of antidepressants being used as pain relief before.

The leaflets that I was given by my GP are a bit naff and I did Google SEID and found hardly anything and I didn't even think about reading up on M.E. until felicajollygoodfellow pointed me in the right direction.

I am now reading everything I can, now I know what to read.

What tests did you have?
Were you seen by a rheumatologist?

I haven't been seen by a rheumatologist and have had months of blood tests for vitamin deficiency and red and white blood cells along with the liver and kidney tests.

I would ask for a rheumy referral, because of the joint pain.
My dd had those symptons and it was strep.

M.E. is horrible. I had it in my late teens and was practically bedridden for weeks. Just getting up to go to the loo was a major effort. Everything ached and my neck and shoulders were so bad I could hardly turn my head an inch. I did nothing but sleep 90% of the time!

I had all sorts of Rheumatology tests as my mum had Lupus but all my results were below the acceptable levels to indicate Lupus.

Read up on it and be kind to yourself. If it is M.E. then pushing yourself to be 'normal' will not work, just rest rest, rest as much as you can possibly do. Hopefully the meds will help ease the symptoms and it will clear up on its own quickly, there isnt a mircacle cure and everyone is different in how long it takes them to get over it.
Good luck.

I have fibromyalgia. I take 10mg of amitriptyline as pain relief but in larger doses can be considered an anti depressant.

I think we all want answers and a cure but when you get fibromyalgia or ME as the diagnosis it can be hard. My dad even said "so you have lazy bastard syndrome" when I told him!

Groovee my Dad (wanker) said pretty much the same to me. He asked if I was leaving work to stay in bed now I had Yuppy Flu.

My doctors are currently trying to diagnose me with CFS (although none of them will actually confirm the diagnosis yet), so you have my sympathy!

Have you actually seen your blood test results? I ask as I have several markers in my blood tests that actually point to other reasons for me feeling as I am, yet the doctors won't even consider them as a potential cause because they are technically in range. I've been taking a number of supplements myself after seeing these results and after 3 weeks I'm starting to feel a bit more normal for the first time in months! Still a long way to go. But it's a relief to see even minor improvement.

Of course that's not to say that your diagnosis is incorrect, but it may be worth you looking into, for peace of mind if nothing else.

I didn't phrase that very well at all! By trying to diagnose me I mean, I've seen 5 different doctors, none of whom will commit to a diagnosis, and who haven't even completed all the NICE tests required before diagnosing CFS. So I've had a lot of "It sounds like CFS" conversations over the past 5 months. I'm not against the diagnosis per se, but I would at least like to ensure that all the relevant tests and possible other causes have been ruled out before diagnosing me with something that can't be tested for.

I only find out if my results are not within the normal range.

You can ask for a print out of your full results. You are entitled to them 🙂 I have to tell my GP's a little white lie and that they are for the doctors that work have referred me too (this was actually true the first time round), but the receptionist should be able to print them out for you.

You're definitely entitled to a set of your results. Just a word of warning though, there's a LOT of high street quacks out there who will offer you iffy advice on these results and take a lot of money off you in the process. I've come across people who have been told they need various stuff by these charlatans, having spent ££££. Usually things like DHEA, T3, and B12 injections when not indicated. Agree though- may be worth asking if you can be referred to an NHS rheumatology consultant. Drugs like amitriptiline and duluxerine may help sometimes

Can't say I've come across any of the high street quacks referred to above yet, but then I'm only very early on in my journey, so who knows where it will lead me 🙂

I have come across a lot of stories of people that have been misdiagnosed due to some doctors following the letter of the law when it comes to blood test results, rather than taking those results alongside the symptoms, because they don't understand much about nutrition and how badly it can affect your body. Now to be fair, these stories are from a bunch of strangers on the Internet, who may well be making it all up 🙂

My own results show a very low B12, vitamin D and ferritin, and a high TSH result. But the doctors have only actually treated the vitamin D as that is below the range. Yet B12 and vitamin D deficiencies, low ferritin and hyperthyroidism can all cause my symptoms - mainly fatigue that's kept me off my full time job for the last 4 months, brain fog, joint/muscle pains, sleep problems and low mood swings, so to my mind it seems somewhat ridiculous not to even look at these as potential causes. I was very clearly dismissed by one doctor that I raised these specifics with, who basically told me to go home as there was nothing he could do! So I totally get the fobbed off feeling. I'm next booked in to see the GP that specialises in nutrition and CFS, so I'm hopeful that I can at least have an adult conversation instead of being treated like a naughty child, who doesn't know what she's talking about. Fine, I'm not a doctor but I'm a grown woman who knows her body and what is normal for me.

Just to be absolutely clear, I am NOT saying that you have been misdiagnosed. My point is that if you are unsure/unhappy with your diagnosis then to do your own research based on your actual results, not on an anecdotal 'your results are fine'. The unknown is always what's normal for you, rather what's in a normal range based on who knows how many thousands of people. From your own research you can then decide what action you want to take, whether that's going back to your GP for further information on your diagnosis, more tests, or a referral elsewhere.