Symptoms getting worse...

emma236

Hi

I'm 27 and was diagnosed with psoriatic arthritis at the age of 11, although I probably had it from a very young age. For years I tried various medications, and found Vioxx was particularly effective in keeping my symptoms stable. However, since that was withdrawn, and then coming off Sulphasalazine due to side effects, I've been really struggling with my arthritis. I take Naproxen which eases the pain a little, but lately I have been getting more inflammation and pain, particularly in my hands.

I spoke about this at my last rheumatology appointment, only to be given the response of "Well you are getting older", and then went on to say my blood tests and xrays are fine (therefore hinting that there's not really a problem). At the age of 27 this is not something I really want to hear! I seem to have suddenly transitioned from a somewhat patronising "You'll grow out of it", which I was told even into my 20s, to "You're getting old"! She also gave me a lecture on keeping warm, as it was raining outside and apparently I was "showing a lot of flesh". In fact I was dressed for work, so had on smart trousers and cardigan, so I was quite insulted by this comment. I pointed out that we were inside (duh!) and showed her my umbrella/coat/scarf/hat combination that I'd been wearing outside to keep warm. It really annoyed me that the doctor brushed me off like that.

The worsening of my symptoms is very upsetting, and I am finding it increasingly difficult to manage day to day things like dressing, as well as it having an impact on my work as I need to do a fair amount of writing. This is the worst my condition has ever been and I am worried for the future. I am normally a very laid back, optimistic person but it is really starting to get me down at times. I am starting to feel disabled, which is a term I would never have even thought about previously as it never really used to affect my life much, so it's a hard thing to accept.

Has anyone else had a similar experience?

Thanks,
Emma

colinone

Hi Emma
Sorry your feeling so down i know the whole thing just gets to much at times, well you found the right place here. Lots of people who will know just how you feel and what your going through. I have PA and RA ,PA since my 20s and the RA started in my 30s I'm 62 now so i had a good run, i had to retire from work 4 years ago and i'm getting over that part of my life now or should i say learning to live with it. O boy the Vioxx was the best thing i ever had and it was a sorry day when they withdrew it, i could climb mountains when i took that. Infact to tell you the truth i did climbe mountains when i took Vioxx. It really is hard to find a drug that works for you and seems to be trial and error for ages. I think at times blood and exrays do appear fine but it does not mean your not suffering and the rheumy should understand that. I have a great Rheumy now, been with her for over 2 years shes fantastic and the staff at the rheumy clinic are great. We dont always see eye to eye but the care is great and they are so understanding. I have had my share of bad ones and some may well be good doctors but they have no people skills. The problem we have with arthrits is that we can look so well and feel so ill you cant see pain and because we struggle on people think we are fine. On your next visit to the rheumy write down all the things you want to say and tell it how it is explain the way you feel and the effects its having on you. I realise your only a young girl but its not all gloom and doom the future can be so worrying with an illness like this but its in the lap of the Gods and a good Rheumy. The stress and worry as you probably know will make you worse so try and take it all in your stride. Its hard to cope with pain 24/7 and it plays on your brain and thats when you start thinking about the future and all the other things. You have to cope even if its just for you. Accepting it is half the battle and your on your way to winning the war. Now disabled when i look back i never thought for one moment i would ever be the way i am and i call myself much worse than disabled at times lol i call myself the S word when i'm mad but what the hell i'm only talking to me. Emma my sweet you have to get yourself out of the rut and try to think positive no matter how hard it is or you will make yourself worse i hope you feel better soon keep your chin up and take your time to smell the flowers. I know life can be a bitch when your so young but you will have better days.
Colin

When God gives you lemons make lemonade

frogmorton

Hi Emma

Honestly if these Drs realised how much they upset us :!: :roll: Makes me mad :x
You're definitely NOT old!!!! In fact you should be in the prime of your life!!! They are sup[posed to take account of the impact your arthur has on your day to day life.
Next time I should take somepne along to support you.
There must be a halfway effective treatment out there for you
Anyway your rheumy is a meanie!!!
Take care Emma - at least you have us
Toni x

scattered

Hi Emma,

Why aren't you on a DMARD? If you're having more pain and inflammation surely you should be on more than just naproxen?

It might be worth asking to see someone different next time you go to the clinic, or asking your GP for a referal to another department.

breane

Hi Emma,I know how you must be feeling as I have OA in both hands and wrists and there are days when I find it difficult to get dressed,comb my hair,hold a cup of tea and even turn the page of a book or paper.The days I get a severe flare up I could cry with the pain.I do get better days and I try to enjoy those but I know the pain will return sooner or later.My GP hasn't been very helpful.He has run blood tests and an x ray ruled out RA but he has not suggested stronger pain killers,just told me to take paracetamol.They don't seem to be as effective as they used to be and I think I will go back to see him again and insist on something stronger.I do think sometimes doctors don't take our pain seriously enough.But I have found this forum a help just knowing other people are in the same boat as myself.Take care, Breane.

gemmapetken

Hi
Im 27 too and have been diagnosed with RA. That was dec 2007 and it just seems to be getting worse. I can really sympathise because at our age we dont want to give up and we just want to be living our life without pain! I dont drink anymore as i was on mtx. The leflumide i was on made me very ill and now the sulphazaine is making my urine orange!! LOL :oops:

But i am training to be a teacher, am part time a technician, going to university one day a week, a scout leader and i also run a house hold and tend to my hubby! I am determined not to give up and hope you feel the same!!
Keep your creaky chin up!!

Mwah!!
LOL
GX

madwestie

Hi emma, i am sure that the Dr's say things like that when they can't think of anything else to say. It is really annoying though to be brushed off with a patronising comment.
If your pain is getting worse and you hands are worse then the should be taking it more seriously. I would go back to your gp and ask him or her to get your next appointment brought forward and explain all the problems you are having. It may help to keep a diary for a couple of weeks making notes each day of how you are feeling how much pain what you have not bee able to do and what you find difficult this will help you when you see the rheumy again.
If you are getting old at 27 i am not sure what the rest of us are I am 41 and my friend is 80 and she is not happy with being told "Well at your age what do you expect".
Keep your chin up (metaphorically of course )
It is bad enough having to dealkl with arfur without having to deal with dr's with the sensitivity of a gnat (and no i have nothing against gnats) you have to keep laughing it is good medicine and it's free.... we're all in the same boat and always here for you.

daisychain

Hi Emma,

I may be going over old ground here as I see you have been dealing with Arthritis for a good while but have you tried another type of anti inflammatory such as Diclofenac ? I found that Naproxen did not work so well for me. Just a thought . By the way I
agree with you about some of these doctors, may be good on their theory but no idea how to talk nicely to patients !

Hope you find something to help.

emma236

Wow thanks to all of you for the words of support! I felt like I was just moaning but I hope you understand it was just a need to vent more than anything.

I have been on almost every drug out there, including Voltarol, Diclofenac sodium, Meloxicam, Mefanamic acid... Plus I was on Sulphasalazine for several years until the side effects got too bad. Even steroid injections did nothing for me, which I'm told is because I'm double jointed... Not that I have the flexibility of double jointedness any more!

I agree that I should keep a diary of how things change, as I always seem to have my rheumy appointments during a 'good' phase, so when they ask how things are I'm quite positive, even though a couple of weeks before I was in agony! Strange how you block it out so easily.

Thanks again for all the support, and I look forward to being part of this community and hopefully passing on a few words of wisdom to other people on here if I can.

xx

magenta

Hi Emma,
Sorry to hear you're having such a rough time just now. I have been treated the same and lectured on why and how joints become inflammed etc. and just told to rest!! I too have a job where I have to write alot and OT gave me plastic tube things that go over your pen/pencil. It gives you a wider grip and they do help me write for longer. I think you can also buy them from Lak****** P******s. Hope you know who I mean :?
Take care,
Magenta x