to think my GP is no longer making an effort and they should be trying more to help me?

[SchrodingersMew]

I've been going to the GP to complain about wideapread pain and disabling fatigue since I was 11, back then the GP just blamed it on me not wanting to go to school (I loved school), no one took me seriously for years and I was constantly given paracetamol and sent to psychiatrists.
Eventually I started googling and researching what could be wrong myself, I was sent to Rheumatology when I was 15 and I asked if it could be Fibromyalgia and was told it could be, I went back and told my GP this and he just agreed no questions asked.
Fast forward 5 years, 20 and pregnant and don't feel any further forward, I tell my GP I think I have Ehlers -Danlos and I want it investigated as it can cause problems in pregnancy and birth, am told I wont as I don't fit the height and weight normals, I go see another GP and ask to be re refered to Rheum, I get a diagnosis of EDS.

Pain clinic and GP are trying to make me take anti depressants that are used as painkillers on a fairly high dose. I really don't want to take them and suggest trying a vitamin infusion instead for the fatigue, he refuses and says.

"I think you are thinking about this too much Schrod and medicalising yourself too much not that I am saying what you say you are feeling isn't true"

I feel like that bloody lost 11 year old again and I am starting to really hate myself and my life, they wont take me seriously and everytime I leave that surgery I cry, if it wasn't for my DS I am sure I would be contemplating ending it all and I have a fair few times. The ironic thing is, I don't ever feel depressed until I visit my GP and realise all hope is gone.

I'm sorry you've had such a tough time of it. GP's tend not to know a lot about EDS because it's so rare.

Keep asking for help - I know how exhausting it is , as it took me around ten years to get help.

EDS isn't just about hypermobility, it's got a lot to do with the way the autonomic nervous system is wired - pm me if you want me to go into long boring detail.

Asea, I will PM you, thank you. :)
Josie, I will have a look thanks. :)

Well you say he is no longer making an effort...... So maybe if you tried what they suggest ?

All this self diagnosis through google is a very bad idea.
Perhaps it's time you changed your GP?
As for your ds, be careful you're not trying to find something wrong that isn't there, you sound a bit obsessed with health issues.

I do have a diagnosis for EDS, a confirmed one by Rheumatology and it is genetic and it was the GP who noted the clicky joints while doing a check up.

Trust me, I hope DS doesn't get it.

Olympia, the problem is it is something I have tried before and it made me really tired, the problem just now already is how tired I am, I'm just worried I will be utterly useless if I go on these.

Tricyclics are quite good for pain, and usually okay in pregnancy. They will make you tired,initially, but that generally wears off. The way to do it with these things is to start on a low dose, and build. I would ask for a referall to your local pain clinic, they can use teach you how to use CBT as a pain control method and may have other, more efficient suggestions for your particular situation.
Good Luck!

I think being " a bit obsessed with health issues" comes with the territory of missed diagnosis , being patronised etc , and I know how you feel re Gp's comment yesterday , OP .

Don't have experience of EDS myself , though I know there are MNers who have it , but your story has similarities to mine ( think am older than you ) - will try to return / PM if I can think of any helpful suggestions

i think some of these responses are very unsympathetic/unsupportive and respondents have obv never had to live with a debilitating fatigue disorder, or a unforthcoming diagnosis for an ongoing health problem.

i have no practical advice except to say my mother has fibro and the lack of care/ability to diagnose and treat her with medication other than mind and life numbing horse-tablet painkillers/zombie antidepressants frustrates her immensely. whilst this doesn't help, it's good to know that this is common. eventually her diagnosis was widespread arthritis...as well as fibro

referral to rheumatology/osteo people, second opinions all round. don't stop till you're satisfied. i would reject advice to stop googling, you need to be armed with info to take on your gp.

hope things improve for you

Dawn - It was the pain clinic who gave me them and I didn't know the sleepyness wears off, I was on the lowest dose last time for 3 months.

Merivel and Mummmsy, Thank you, that is exactly how it is just now, just sheer frustration with no end in sight but a 7 month old that needs to be taken care of, I just desperately want to be a great Mum to him and able to do things with him that he will want to do!

I have actually mummsy- which is why I suggest a different approach. It's clear that op condition is making her life miserable, it's chronic and doesn't seem to be shifting . Her Gp seems unable/unwilling to help so a second opinion seems first place to go.

Gigondas wasn't directed specifically at you, there are a number of posters who said to stop googling

Agree you need to read widely , can make all the difference to getting a diagnosis / most suitable treatment / guts to to persist . Obviously you will need guidance from professionals able to interpret studies , but over time & with support from others with experience of similar symptoms , you will feel more confident about which info is relevant & won't be swamping the GP with printouts ( though if that's what you need to do )

Blogs on day to day life with health issues can be very helpful - recommend benefit scrounging scum ( won't link , as needs permission )

I am actually tired of reading now. :( I have tried and the one drug that has helped I had to literally beg to get it as it was expensive, the pain clinic last week suggested I go on the max dose of that which I would love to do and I know it would make a world of difference but my GP wont let me, presumably for the same reason he wouldn't give me it in the first place, it's expensive.

Time to change GP

Schrod- I feel your pain, literally. Ive had chronic joint pain since being a small child, and have been complaining of it to the gp since my early teens. Finally last year aged 36 I went to the gp and told him what I thought was the problem, he referred me to rheumatology and the consultant confirmed it. I don't have eds but hypermobility syndrome and my joints dislocate in normal day to day activities causing arthritis. It's crap and they have no solution for me except physio which hasn't helped and painkillers. I have tried amytriptiline (antidepressant) in a low dose which did help but I had to stop taking it due to ttc.

I second the suggestion of spatone. You can buy it from tescos. My mum used to take anti-depressants for pain management. (She has osteo-arthritis). They worked but the combination of drugs she was on did make her very tired.

Humph to those who think doctors know best

75 percent of women correctly diagnose themselves according to bma (imo most fo the rest are just incorrectly diagnosed by their gp but have,kt found out yet

Change gp for a fresh approach - new eyes and all that - and try to get those b12 and iron levels back up. Will they do more b12 injections or can you just buy otc high dose b12? Spatone has worked for me as well for iron. Is there a reason why you are low in both? Could be worth asking gp

Some hypothyroid websites suggest a lot of fibro people (not all) get better on thyroxine, could be worth reading yp on (dr skinner, dr peatfield, ) this is a bit controversial tho I gather

Are you low in anything else eg vit d or folates? Will gp run a set of tests including those?

I'm sorry your gp won't give you the painkillers you need - that sucks. Maybe a new gp would be more sympathetic?