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Date: 08.07.2013
From: Ruth

Subject: Still no diagnosis, don't know where to turn

I'm not really sure where to start. I'm 25 and have had various joint pains since I was 14... my dad, his mother, brother and sisters all have joint pains/rheumatoid arthritis/osteoarthritis.

The pains started in my hands/wrists and ankles and have slowly increased to my knees, hip, shoulders, neck and back. I'm pretty clumsy and have had lots of injuries/sprains etc so have had lots of physio. I still go to a private physio every 3-4 weeks to try and help the pain. My wrists are particularly bad at the moment - feels like someone is squeezing them and there's stabbing pain going through my fingers. I've been tested for carpal tunnel syndrome in the past but it was negative.

I've basically been struggling along on a high dose of ibuprofen for the past 4 years. Various doctors and consultants have fobbed me off, saying I'm too young to have problems, my tests are normal or I don't have any swelling.

In February I became ill, with severe abdominal pain and various other symptoms which my GP tried curing with several different antibiotics and I ended up in hospital for. The doctors don't seem to have a clue what's wrong with me (originally thought kidney infection) so I am still undergoing tests. At the moment they're investigating inflammation in my bowel.

Anyway, my current consultant (a gastroenterologist) was shocked I'd been on ibuprofen for so long and immediately took me off it. I'm not allowed any other NSAIDs and paracetamol and co-codamol have no effect on me. I'm taking tramadol for the abdominal pain, but it has no effect on my joints. They have gotten dramatically worse to the point I can barely walk some days without crutches.

I finally got referred to a rheumatologist last week and was really hoping he'd have some suggestions. But he didn't. The attitude seemed to be "well you can walk, your blood is normal and you're not all red and swollen so you must be fine." He said I 'would' develop RA but didn't have it yet. Then he said I should go back to my GP and ask for painkillers!! What does he think I've been doing for 11 years?!

So now I'm completely stuck and feeling really low. Nobody seems to realise just how much pain I'm in. I have an allergy to colourings so am severely restricted in what medications I can take, and the ones I'm on aren't helping.

I don't know what to do.
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Date: 08.07.2013
From: Carol

Subject: Re: Still no diagnosis, don't know where to turn

Hello Ruth, Am so sorry you are suffering so badly for the length of time too. I am 65 with arthritis so my problems are different. I maybe completely wrong but has anyone suggested that fibromyalgia might be your problem or part of it. I know that it causes pain all over and that there no tests to diagnose it also it is treated with amytripoline I think it is called or something like that. Also sufferers also often have other problems IBS body temperature control to name a few. My apologies if you have already been down this route. I do wish you well and hope you find
some help soon

Carol
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Date: 12.07.2013
From: Ruth

Subject: Re: Still no diagnosis, don't know where to turn

Thanks for the reply. I've looked into fibromyalgia, but that's really more muscular and has specific points that when pressed are painful (used for diagnosis) that I don't have. It's definitely more of a joint problem I have. I'm going to ask my GP to refer me for a second opinion, but I'm not very hopeful.
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Date: 12.07.2013
From: Carol

Subject: Re: Still no diagnosis, don't know where to turn

Good luck let me know how you get on

Carol
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Date: 12.07.2013
From: Sean

Subject: Re: Still no diagnosis, don't know where to turn

Hi Carol

Sorry to hear that you are in pain - I was prescribed anti-inflammatories when my arthritis hit me at about age 19/20 (1985 /86) My father who had arthritis from age 19 - developed a stomach ulcer and other side effects from his drugs in the late 1960 and early 70s - I grant that the medication has moved on a bit since then but ibuprofen is proven to impact your gut lining.

For your IBD please consider this - hopefully it will help your arthritis too - I revert to a similar regime if I get a flare up in my back, ribs and hips

http://crohnsdad.wordpress.com/2012/01/13/ibd-pilot-study-using-diet-based-on-scd-shows-100-success-rate/

SCD diet and GAPS diet
http://www.youtube.com/playlist?list=PL43DBBC065E0D7FC3

http://news.bbc.co.uk/1/hi/health/4144775.stm

There is an irony that drugs we have for arthritis work but might actually exacerbate one of the main causes.
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Date: 14.07.2013
From: marlene

Subject: Re: Still no diagnosis, don't know where to turn

Hi Carol, I would definitely get your GP to send you somewhere else. It might pay you to go on line and research your local hospitals. Try to find one that has a good Orthopedic Department.
Have you ever had CT or MRI scans?

Speak with your GP and let him know where you would like to go it is your right.

I wouldn't try any diets or supplements you need to be diagnosed properly. It is wrong for anyone to make suggestions when you have not been diagnosed.

Take care and let us know how you get on, you must be firm with your Gp and say that you are not satisfied. GOOD LUCK xxx
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Date: 16.07.2013
From: Carol

Subject: Re: Still no diagnosis, don't know where to turn

No sure if the messages from Marlene and Sean were mean for me or the original poster Ruth. They are addressed to me Carol but I think they are for Ruth. I just replied to Ruth just to ask if she been down the route of fibromyalgia and to offer sympathy. Best wishes to everyone
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Date: 16.07.2013
From: marlene

Subject: Re: Still no diagnosis, don't know where to turn

Carol you are right I do apologise. poor Ruth must think we are so rude I apologise to you also Ruth. I hope you are both doing well!!!
Take care and once again sorry.
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