Newbie, and a bit confused/lost

TheBeastWhatSqueaks

I've been experiencing increasingly severe bouts of pain, mostly in my knees but spreading to ankles, feet and occasionally hips, hands and wrists, for the last five years or so. I'm now 27, and for the last month I've been experiencing the worst pain of my life. It's so bad I can't sleep, and when I do sleep it's not restful.

My doctor prescribed me painkillers with a "wait and see" attitude, but I've been back to him three times since, and he finally admitted that he thinks I have arthritis, most likely rheumatoid arthritis. We're waiting on bloods to come back before he confirms it. It's been a horrible time. I'm missing out on college because the pain is so bad I can't walk, and when I can walk, I need a stick to help me get further than the bathroom and my bedroom. I feel like a complete fraud, however, because there's no definite diagnosis yet, painkillers do nothing except disturb what little sleep I get, and while my friends have suggested a wheelchair so I can still get to/from college, my mum keeps telling me not to be a hypochondriac.

Has anyone got any advice on the best course of action? Should I keep bugging my GP, or wait for a diagnosis before opting for a chair?

salamander

I would ask for a referral to a rheumatologist whatever the outcome of the blood tests. This for two reasons; firstly, if the bloods don't show much it doesn't mean you don't have a rheumatological condition and secondly, if you do have one, you need to start treatment asap in order to prevent joint damage and get you back to normal. GPs are not specialists in this department and you really do need to see a specialist. Best of luck. Let us know how you get on.

Soretoe2

Hi, I'm very sorry to hear what you have been going through. You need to ring or visit your gp and check up on the blood test. They may be waiting for you to contact them. You also need a better hold on the pain control and sleeplessness so tell your gp that you are finding your current prescription is just not working for you. This may need trying several types of medications until you hit on the right one/combination for you. This is normal for us pain sufferers, so don't think that you are failing or being difficult - you are not. It always takes a while unless you are very lucky.
Then you will probably be able to be reffered to a rheumatoid consultant if it's definitely RA. Possibly also a Pain Clinic or Orthopaedic consultant
Families can find it difficult to cope with any arthritic condition diagnosis at first, especially when you are so young and they may not have come across it before. So bear with them and explain to them all you know, once you have the information yourself. It will be a probably be a shock to them so they will also need a bit of time to assimilate it all.
As to the wheelchair, this is a personal preference. If you really can't walk or get around on your legs then it is a possibility. You always have the option to use it when you need to and leave it in the corner when you don't.
Being comfortable and in control of your body is one of the most important parts of dealing with arthritis and living as normal a life as possible.
So go and get your results and let us know how it goes, Good luck and be kind to yourself, Joy

bubbadog

Hi thebeastthatsqueaks, 1st and fore most welcome to Arthritis Care forum, I agree with salamander get your G.P to get a referal to a Rhumatologist, Arthritis has a way of hiding it's self and though tests may come back clear it doesn't mean you don't have Arthritis and you don't want to end up like some of us (myself included!) going round and round in circles for months and even years not knowing whether or not you do have a type of Arthritis. And as for a wheelchair this has to be your decision, if you feel you need it to let you carry on a full and happy life then get one, otherwise hold off buying one. Welcome again to Arthritis Care forum, you did the right thing joining up!

hileena111

Hi
Welcome to the forum.....I agree with Salamander as well re getting a referral regardless what the bloods come back as.
As for your family......we can have the most supportive families but they dont really understand the pain unless they have it.
If you need a wheelchair to get you about, get a wheelchair or scooter or walker/rollator.
Think of it as a coping mechanism....not giving in.
I'm much older and have OA not RA but my mobility is bad....but I have my car, my 4 wheel rollator which I can put in the back of my car if I'm going somewhere or a scooter [which I cant manage ...too heavy and wont fit in my car} which fits in my husbands car for long hilly *walks* There are ways......you can hire wheelchairs/scooter etc to try them out first.....I'm sure there will be somewhere close by.
Good Luck
Love
Hileena

salamander

just wanted to add that you can almost certainly borrow a wheelchair from social services - just ring them up. I realise you are feeling terrible now, I couldn't walk at all when I first got ill, but you will regain your mobility once you start appropriate treatment. Social services or Occupational therapist can also let you have other equipment you might need for the moment. I didn't ring them up when in your position but wish I had. Things seem bleak right now but they will improve.

p.s.some councils have a mobility scheme where you can get reduced taxi fares,worth asking OT what help they have in your area. Also worth asking college what help you can get, any bursaries to help with travel to college perhaps?

hileena111

That reminds me .....you can get a wheelchair from the red cross. In the North East you just have to give a donation

Love
hileena

tillytop

Hello and welcome - I love your username

I am so sorry you are struggling so much - and so sorry too that your GP seems to be dragging his heels, even though he has a suspicion that you have RA. Research shows that early diagnosis and starting promptly on meds can make a big difference to the prognosis of RA so my view is that you really do need to ask for an urgent rheumatology referral (particularly since there can often be quite a wait for appointments). Like many GPs, yours seems to be under the mistaken impression that blood tests can confirm a diagnosis of inflammatory arthritis - but the blood tests are only an indicator. As the others have said blood tests alone will not confirm/rule out inflammatory arthritis. Diagnosis can be complicated and only a rheumatologist can diagnose, based on factors such as blood test results, symptoms and possibly xrays and/or scans.

On a practical note, has your GP suggested anti-inflammatories to see if they help? (If he does prescribe anti-inflammatories, do make sure he also prescribes a stomach protecting drug like Lanzoprazole or Omeprazole alongside because anti-inflamms can be hard on the tum and docs sometimes seem to forget this).

Really good luck - and please do keep us posted on how you get on.

Thinking of you.

Tilly xxx

valval

hi welcome have you let collage know they should help all they can second get that refural can take a while and you need to see some one if the pain is as bad as you say you need far more help than you are getting hang in there it will get better val

barbara12

Hi and a warm welcome from me
You are amongst people that understand some of what you are going through, and just talking and getting it all out is a big help.
You do need some proper pain relief, go back to your GP and try I do say try and get over how bad the pain is, and get those bloods test, although I have found them to be inconclusive so dont count on on them alone.
I do wish you well and please let us know how you get on xx

frogmorton

Welcome to the forums from me too

BUT so sorry you have had to find us.

I totally agree with the others taht you shoudl ask to see a rheumatologist anyway - this woudl speed stuff up and anyway my bloods we negative. There is such thing as sero-negative RA too sadly.

Prior to diagnosis (well i still dont think I have a real one), I took cocodamols and diclofenic (gave me a very bad belly though) used icepacks on sore joints and my stick.

After 'diagnosis' I added a better anti-inflam, amitriptyline (helped sleep too) and a Disease modifying anti rheumatic drug.

Life is MUCH much better now.

Things will improve for you once you get proper help. In the meantime I am sorry the) family are minimising your pain (this can be worry and guilt - not always being deliberately cruel/hurtful). I suggest you get one of them to accompany you to your doctors/the rheumatologist when you get an appt.

Oh yes when you do get one ring his/her sec and ask for a cancelation at short notice too.

Love

Toni xxx

tjt6768

Welcome from me too, keep on at the docs, and don't feel a fraud, I know it's easy to say but have been there in the past..

Very best of luck, keep posting and let us know how things are

ShulaArcher

Hello

Just wanted to say Hello and add my agreement to all that's gone before. This is a good place for you to get advice and support. Also, there should be a student support person at your college to help you there. It would be worthwhile finding that person and making contact as soon as possible.

Hoping for better things for you in the future

Shula

wall1409

Hi

I agree with everyone on here, my GP sent me to a muskular skeletor clinic for physio, I went 4 times and they realised something was wrong so I was referred to a rhuematologist. First time I seen him I had bloods and xray and was told if all's well I wont need to see him again, then got a letter as xrays showed inflammation so went to see him again, more bloods and now getting an MRI on Tuesday, so quick. Bloods dont always show RA mine dont but I am whats called borderline and Rhueme has suspicions. Dont be fobbed off by GP, I was just getting drugged up, still am to a degree and trying to work full time. See a Rheumatologist asap hun. Good luck and take care xxx