My Story

jimmydave937911

Hi all,

In brief, I have just posted this message on another thread but I thought I would put it on here in case anyone else could shed any light on 'my story so far'. I have not mentioned everything but might try and expand a bit later when I get home but thanks in advance for reading!
"Hi Toni/Mark,

Firstly thank you for your quick replies. Secondly, I have just spent about an hour writing a response to you both and when i clicked 'submit', the page had timed out and I lost it all so I am going to have to try and fit everthing into a much shorter reply! I'll sum it up now and then probably try and write a more in depth message later!

Just briefly about me, I am 27, at the time of this developing was pretty fit and healthy and had no long term illnesses.

In the last year I have had pain in my foot, finger, back, spine, neck, thigh and chest (all these pains have usually left one place and started on another pretty shortly afterwards). It started in my chest (apparently this was costochondritis) and then spread. It got to the point where I could barely move out of bed so went to the docs and was given Indomethacin. The Indo helped but it wouldn't go away so was signed off work and referred to a rheumy. During this time was given citalopram as I got quite down (I am now off these thankfully). In the last 9 months I have had multiple blood tests, 2 xrays, 2 ultrasounds, CT scan and an MRI. Pretty much everything has come back with nothing apart from the ultrasound in which they have found that I have enlarged lymph nodes, going for a small op next month to have one removed for testing.

This is a hugely shortened version of events than it actually is but basically now I have gone from fit and healthy and 'normal', to being 100% reliant on these tablets and not feeling at all like the person I was a year ago. My concentration is poor, I feel pretty tired a lot of the time and unless I take the 2 tablets a day it hurts to even put my socks on in the morning. In the last 2 weeks I have also developed some kind of lump on the middle finger of my left hand, i'm not saying it is but I have researched rheumatoid nodules and these fit the bill pretty well. I've done a lot of research on most diseases such as RA, AS, Fibro etc and I seem to have a few syptoms of each but nothing definite. Reactive arthritis seems to be the best fit but my concerns are that a) I am now reliant on tablets b) will it ever go away and c) is it going to get worse? Obviously this all depends on what it is though.

Do you have any similar experiences or have you read anything that looks familiar? Obviously it's getting pretty frustrating for me now and I appreciate there are people out there with a lot worse but like i said, i'm concerned that this is going to get worse???

Thank you so much for reading through this and hopefully i'll speak to you soon (and apologies for the bad spelling/grammar, i've been banging the keyboard in a rage since I lost the last message!!!:).

Rob"

pinkbritishstars

Hi Rob

Welcome to the forum :-) sorry you've had to find us though.

I can relate to some of your story.

Look forward to seeing you around the boards.

Take Care

Pink

traluvie

Hi and welcome to the forum,

I am 33 so not much older than you.
My pain started in my finger and progressively went from joint to joint.
I have had various bloods, ultrasound and xrays and bone scan.. Bloods came back relatively normal,ultrasound was normal, xrays showed OA and bone scan showed inflammatory arthritis...What kind of inflammatory arthritis is unknown and may never be known as there are over 200 different types of arthritis.. I take various meds, steroid injections and a disease modifying drug..I have had my symptoms for 18 months and although the meds are taking the edge off, things have not yet improved for me, but that doesnt mean that it wont for you.. Everyone is different and it can take a while for a diagnosis and a while to try and find the right meds to help.. It can be a very frustrating time, but you have the forum here an dthe helplines to support you.
Might be worth writing a diary of symptoms/pain/things you are unable to do etc, then take this to your GP or rheumy(are you under rheumy).
What meds are you taking now??
My best advice is to take each day as it comes, and to try not to look to far in the future as it is impossible to predict how things will be, and you will only add stress if you are worrying..

jimmydave937911

Hi Tracy,

Thanks for the response. I'm currently on Indomethacin (75mg, 2 a day) and cocodamol as and when.

Yeah my rheumy is based in the new QE (i only say that as I see your from Redditch and probably know the QE, i'm from Solihull).

She's pretty good but I get the feeling she is at as much of a loss as I am. At least she keeps trying with different tests though I guess.

Like i said i'm having one of my lymph nodes out next month so we'll have to wait and see.

When did your symptoms start Tracy? Was it the 18 months you mentioned in your message or was there anything before that?

Thanks again for the response

Rob

traluvie

Rob i was under Dr Bowman at selly oak but have requested to be seen at local hospital near me, i think a fresh pair of eyes are needed lol..

Sounds like you are not on a lot to help with your pain, maybe a word with Gp about this, see if there is anything else that you can take that may help with the pain..

My symptoms started with a pain in my finger september 2010, same month i had swelling,Gp signed me off work and gradually it spread to other hand , shoulders ankles elbows etc.. it was as if it was working its way around my body attacking me..Too be honest i cant say i noticed anything before.. I had usual aches and pains but i put that down to my job, no major concerns, and when the pain started in my finger i thought it was due to repetitive use of my hands, Gp must have suspected something as she got me in asap at the old selly oak..

Feel free to pm me if you would like to ask me any questions..

stickywicket

Hi Rob. I've just replied on the other thread so wont bother repeating myself. I'm pleased to see you're under a rheumatologist and I hope they get to the bottom of things quickly.

jimmydave937911

Tracy,

I've sent you a PM but they seem to be stuck in my outbox, have you recieved them?

Thanks

Rob

stickywicket

Rob, PMs stay in your outbox until the person they are addressed to logs on. Then they go into their inbox.

suzygirl

The QE has some of the best rheumies, it is also a Lupus centre of excellence. Professor Caroline Gordon who works there does a lot of work for EULAR and other organisations.

I know its hard but they are monitoring you and, it can take time for the symptoms to emerge and bloods to tuurn positive.

I wish you well.

bubbadog

Hi Rob welcome to the forum! I have family who live in Solihull and I live in Redditch. I have Osteoporosis and a short verision of my story is have been pushed from one consultant to the other until they decided all they could do was pain manage me. Now a new Rhummey has arrived and I was told he may beable to help me. So my G.P did some bloods and the results wheren't good and now I've been refered to him! So yes I can also relate to your story it was only as recent as 6yrs ago that I was diagnosied! I thought I was going mad! The 1st thing the doc's said was it was Fibromyalgia and I thought fine but my legs still gave way and I was still in alot of pain. It wasn't till I changed my G.P and she started from the beging with me and sent me for a bone density scan and that was how the Osteo was found. I also feel tired nearly all the time and I'm definately not the same person that I was before I got hit with Osteo! I hope you get some answers so you can start living your life again.

barbara12

Hi Rob
I am sorry you are in such a bad place, but now you have found us lot, at least you can talk to people that understand some of what you are going through, and believe me this is a big help.
I have OA in multiple joints, but at the min I am having lots of blood test because of the pain in my hands, and yes I have a noduel on the index finger on my left hand, it isn't painful, but the rest of the hand is.
I wish I could help more with advise, but I do wish you well with everything, and dont forget we are always here.