Old newbie needing advice

Haydn12

Recently I was diagnosed with PsA. The whole process of being referred to a Rheumy was really difficult. In 1996 I had told the blood transfusion service that I suspected I had arthritis & they told me in that case they did not want my blood anymore. Then for many years I went to the doctors to complain about the aches and pains. I was soon told it was in my mind. One told me not to come back unless I broke a leg. In anger I did not go near them for years. Then with persistent neck pain I went back to a nurse at the surgery and explained that I wanted to give blood again and needed them to confirm with a blood test that I did not have arthritis so that I could (subterfuge - hoping that a blood test would find out what was wrong with me). They told me there was nothing wrong except raised cholesterol and put me on statins.
Of course this did not answer my underlying problem so I continued to complain. They gave me counselling and fluoxetine. Annoyed I campaigned to stop all the medication - successfully. Then I had a bad flare up which caused a dactylic thumb. Even after X rays they did not want to believe I had inflammatory arthritis and I had to persuade them to refer me. Ultrasound showed that my hands (all that has been scanned so far) were full of inflammation and indicated also old scarring.
So now I am on Salazopyrin (since January) and am now up to 2000 mg a day. I find it very difficult to know if there has been much real improvement as PsA is nothing if not sneeky and I still get extremely fatigued.
What bothers me is the thought that I could have had this for many years - in fact since at least 1996. Also and especially that one of the first symptoms that might be ascribed to my condition also happened (though quite rarely) many years ago - possibly c. 2000. This was a sharp pain towards the base of the spine followed often by a growing numbness which quickly drained my body of energy such that I usually felt as though I was about to collapse. I couldn't move. It had a paralysing effect and as I began to recover sensation would have to sit down immediately while the sensation passed. I have read that something like this can be a first sign of the disease and since my last flare up (which apart from the thumb left no signs at all) have had pain in the neck, lower back, feet shoulders, elbows, wrists and hips as well as chest. But these are all 'passing' and I can understand why many articles refer to PsA as a mild arthritis.
However I am not due back at the Rheumy until July and do not know if he might consider the condition just 'mild' and probably even 'solved' though I am not confident that the medication is working. I am also not confident that it has been diagnosed 'in time' or that the progress of the disease has been inhibited. It seems to me that the disease has progressed and may be lying 'dormant' (as before?). I think they should consider scanning other parts of my body (especially the back) but have real difficulty getting these concerns across. Also I am now 61 and have already experienced the GP suggesting my symptoms could simply be 'aging' which it is hard not to concede in the circumstances especially as my other condition would appear to be familial high cholesterol. Any advice please. Thanks for being patient enough to read my winge.

dreamdaisy

Hello Haydn12, I am not a member of the helpline team, just a forum member, but I was so saddened to read your story. I am sure the team will respond soon but in the meantime how about posting again on the LWA part of the forum? (Living With Arthritis) I am sure other people would be more than happy to offer you support and encouragement - I will for one, once I've finished work! I wish you well. DD

helpline_team

Hi Haydn12,

It sounds like you've had a tough old time. Towards the end of your story I got a little bit confused regarding the part where you wrote

"It seems to me that the disease has progressed and may be lying 'dormant' (as before?)"

I am not quite sure what you mean ie. if it feels like it has progressed, what makes you think it is dormant? Or does it feel dormant because the
Salazopyrin is working?

Perhaps it may be a good idea to give us a call so that we can discuss future options in greater depth.

Best Wishes
Simona

Haydn12

Many thanks for your replies and suggestions etc. I feel that it may have progressed as I have been getting pains in new places occasionally. As well as in the Achilles tendon at one point the pain had also got into the sole of the foot and up into the calf of the leg such that for a couple of hours I couldn't go anywhere. But eventually it eased off. Similar has happened before so that it is not hard to see me going from being just a poor walker to needing a walking stick. Most of the time though my pain is only transient so I often feel guilty for complaining about it when so many people are having much worse problems. This is what I mean about my experience of PsA being 'sneaky' and difficult to read and assess, so it is difficult to know whether the medication is successfully limiting it or not.
Anyway thanks for the suggestion that I should phone the helpline, I will do so. I am very impressed with how supportive people are on here. Marvellous!

skezier

Hi Haydn,

I had similar with my old doctors... was told not to bother them with anything to do with my known or suspected conditions and after 10 or so years (they relaxed the area thing) I was able to leave and have real ones so maybe you could do that as well?

Mine was too late and too advanced by that time for surgery and yep I do blame the old docs and hate someone else having the same kind of 'treatment'

Some does come with age... its what happens but not this much!

Its kinda a cop out actually...

See a different doc is something i really would recommend.

I have pa and its eating at me a bit but can really bite then ease off but the damage its done is permanent if that makes sense?

Reading the last post you did (and I hope i am not out of order helpline folk) I am wondering if you have a bit of tendonitis and the foot thing, planta something or other as that also makes the feet so sore ( I got it just now I am sure)

Physio might help as well and worth asking about.....

I really you get some help from somewhere but please if you can change gp's!

Nice to meet you and ring the helplines. Cris x