Introducing myself :)

Rosycheeks

A big hello to everyone

I have been reading the posts on here for a few weeks now, and am sad to see how badly some people are suffering.
I have PA. I have had it for about 4 years. It affects almost all my joints (but thankfully spares my shoulders and neck). I was first given sulfasalazine and then hydroxychloroquine. I had an allergic reaction to the sulfa and the hydroxy did nothing. Then sort of had a year where I took nothing because they wanted me to take mtx but I really didnt want to. The more everyone went on about it the more I refused :???: In fact I kinda spent the year in a state of anger and depression. I remember telling one doc that you wouldnt leave an animal to suffer like this.. you would do the decent thing for it. Guess I have snapped out of that now. Fed up with the pain and the painkillers only ever taking half of it away, so I agreed to take Leflunomide a few weeks ago. All was kinda going well, just slightly dizzy, until they checked my bp which the nurse almost had a coronory over herself! Now have to take blood pressure pills as well as the leflunomide as its causing raised blood pressure.
Anyway, this is turning into a rather long introduction :oops:
Take care all xx

Poppyg1rl

Hi Rosycheeks,
Very nice to meet you, welcome to the forum sorry you had to join us in our arthritic battle but, you've come to the right place for comfort, advice and amazing support.
Look forward to seeing you post again, I have PA too, feel free to pm me should you want to talk, I'm a good listener I'm told
Welcome again xxx

prefabkid47

Hi Rosycheeks
Welcome to the forum.We are a very sympathetic and supportive crowd here and our knowledge is gained from our own experiences.I myself have OA and RA.
We are not always a serious bunch as you will see if you explore our chit chat forum......................
Ron

dreamdaisy

Hi Rosy, it's nice to meet you. I too have PA and discovered in April that I also have somewhat advanced OA in my knees - that crept in under the radar! I suppose having had a lifetime of taking meds I have never once refused to try anything, that to me seems utterly pointless and self-defeating, and with something like arthritis, well, it ain't gonna go away just because one pretends it isn't there. No wonder your doctors pressured you, perhaps they did not explain clearly enough that leaving it to run riot only ensures further damage, whereas I firmly believe the earlier you begin the meds the better the chance of success. I had five undiagnosed years, when all my GP would say to me was 'That fat left knee will sort itself out.' It didn't. I did not start any meds until I was seven years into it, and by then it was far too little and far too late.

Meds wise I am on a great deal more than you and with very little benefit. The PA meds don't touch the OA at all (and there is no reason why they would, the root causes are very different) but I hope the lef proves to be beneficial to you. I also have to take BP tablets as the humira I inject increased my BP, but so what? This is the way Westerm medicine works: you have problem A so we will give you drug 1. Ah, drug one has led to problem B, so you can have drug 2 to sort that out. Right, drug 2 has led to problem C . . . . and so it goes on.

You do adjust to the pain over time, what is harder is learning to manage one's limited supply of energy. Fifteen years into this I still get it wrong from time to time, but I have learned to stop when I feel I can do more. Arthritis is a lounge-lizard smooth-talker of the worst sort, he seducues you into thinking 'Yep, I can do chores today' then he bites back with a savage grin and a twirl of his luxuriant moustache. The pain dullers only do that: they do not 'kill' the pain, it is always there and now I don't really notice mine any more. Make sure your pain relief is adequate and can cover you for all occasions. I wish you well. DD

Rosycheeks

Thank you for all your levely replys so far I feel very welcome and amongst people that understand.

With regard to why I didnt take any dmards for a year ish, I guess I had a kinda 3 year old style tantrum about it all :oops: I was so angry with myself, thinking well if my body does not like the pain it should just stop doing it to itself I went down the route of truly thinking I could 'will' it to go away. And then I thought it was all in my head, and the docs were wrong... and so on.

I was so angry because I felt defeated and gave up on my nursing training because the pain was too much. I was struggling to pop my own pills from there packets and kept thinking how was I supposed to do all the medication on a ward? Ha like I said, looking back I guess I had a major strop on about it

With regard to pain relief, whilst my GP is ever so nice, he seems to think I can get by on tic tacs. It took me 2 years just to get co codamol. I just kept getting told to buy paracetamol. And even now every so often he asks if I could drop to the 8/500 co codamol instead of the 30/500 ones. This is met with horror and a stern refusal from me

Thanks again for taking the time to reply to me xxxx

dreamdaisy

Your GP may be nice but he ain't much of a caring type of doctor, is he? I have cocos 30/500 for every-day use (I average about four per day now but yesterday didn't take any as I was in a strop and so was determined to make life harder, and I did! ) then for night if things are tough I have 50 mg tramadol (they make me dopey, I cannot function on them during the day) then for the **** me times I have slow-release 100mg tramadol which are very good: I can function as much as I ever do and top them up with cocos. Paracetamol do not have anywhere near the clout we need, nor do 8/500. Stupid man. Knee him in the billhooks next time you see him then sweetly explain, whilst he rolls around crying, that what he is feeling is similar to your pain level and no, 8/500 don't cut it, neither do the 30/500. Arthritis pain is not like a toothache - that can be sorted by the dentist and with some dullers and it don't come back. This pain grinds away at us, day and night, it is tiring, it drains our energy, it affects our tempers and our relationships. One thing any GP needs is empathy. Yours seems distinctly lacking in that area. DD

frogmorton

Hi Rosy

really pleased to meet you.

there are lots of folks on here who have PA and other typed of inflamatory arthritises who will totally 'get' where you are coming from.

Glad you have joined us and am sure confidant and certain you will get a lot out of being part of this forum.

Also glad you are now on medication which is helping even if (as most of then seem to) it has given you other issues to treat!!!

Take care
Love

Toni xx

bubbadog

Hi Rosycheeks, Wanted to welcome you to the forum, hope you enjoy it as much as I do. Amanda/bubbadog.

constable

Hin Rosycheeks

So glad you found this forum. There is a wealth of advice and encouragement here for you. A super bunch of people with various types of arthur. There is a good chit chat section where you can have a laugh etc.

It is really nice to meet you and hope to see you posted around the forum.



karen xx

hileena111

Hi Rosycheeks
Welcome to the forum.....I have OA but pain is paoin is pain.
You'll get loads of support on her
Love
Hileena

lilyflower

Hi, welcome to the forum I hope you find it as useful as I have.
Were a friendly bunch here.

Turbogran

Hi Rosychecks
Welcome from me too I have OA in my spine and 1 knee. and came on here in May and have had heaps of support i'm glad i joint hope to see you posting around the forum its a great place to be.

Rosycheeks

Thank you all for making me feel welcome and sharing your storys with me.

If I could just borrow dreamdaisy to go to my GP with me to explain about the pain relief life might be a little easier

Thanks again, nice meeting you all

traluvie

Hi Rosycheeks..

Welcome to the forum..
I see you have already met a few of us..
It helps to know you are not on your own..
DD would be a great support to come with you to your next appointment.. we can all join in on pocket duty and give you some extra support..