Newbie struggling with inflammation

perasperaadastra

Hi everyone , I found your forum for support after having a rather crap few months with various inflammations , my consultant think s I may have psoriasis arthritis and I ve been on sulphazazine for over 12 months , I had a good six months but now nothing seems to be helping , both my knees are like football s and are very painful , I had two courses of prednisolone prior to xmas and the steroid injection but my joints , most of them but in particular knees , fingers ,neck are so so stiff and painful , its takes me ages to get moving in the morning ,and now is only possible if I take two co codomol , and I dont like taking pain killers due to the woozyiness , the fatigue is incredible even after a little exertion , think I massively over did did it yesterday trying to declutter the house to the extent that i ve been in bed most of the day only hobbling around to sort the kids ;-/ , I must remember to pace myself but its so frustrating. I m under three consultants , a neurologist , for tri gmengial neuralgia and nerve problems in my right arm , a stoke consultant as they think i ve had two strokes in past ( but i think thts a mis diagnosis as thought at time it was a trapped nerve )and the rheumatologist who thinks there may be a link between all the incidences of illness and inflammation i ve had over last few years ,I guess I posting to express my frustration with getting an accurate diagnosis quickly ,I ve had inflammatory conditions for years starting with iritis after my son was born 16 years ago , Anyway I m trying to stay positive but it is getting me down not being able to do everyday stuff like open bottles , lift the kettle etc , I ve stopped drinking red wine in case that makes things worse but any other s with psoriatic arthritis or inflammation diseases who can give me any further tips would help , I m 43 , and dont know anyone my age with this condition , thanks Astra (excuse spelling lol )

dreamdaisy

Hi, it's nice to meet you but I am so sorry you have had to find us. I too have PsA and it's not easy at times. Mine began in my left knee, I ended up with a knee that was 27 inches round and solid thanks to years of untreated inflammation - my GP told me it would sort itself out, yeah, right.

I've had a rough day, I'm off to bed now but I'll come back tomorrow and properly reply. I wish you well. DD

stickywicket

Hello perasperaadastra. It's nice to meet you. Staying positive is not at all easy with a disease like arthritis and it sounds as if you have further health problems in the mix too so feel free to vent your frustrations any time you wish on here. It's a good safety valve.

It sounds as if you are very much going through the mill right now and Christmas must have been very difficult. I have RA and I'm fortunate in that I can always rely on a steroid jab tomake things a bit better, even if it's only temporary. It must be very dispiriting to find that nothing is doing much for you at the moment.

I think it could be a good sign that your rheumatologist feels all your conditions might be linked because at least it means all consultants should be working together. However, things are tough right now for you. When do you next see your rheumatologist?

I'm afraid pacing ourselves is something that we all have to do but many of us, self included, only learn the hard way. Next time you're tempted to overdo things try to remember how you felt when you posted this and hold back. It's much easier, in the long run, than trying to recover lost ground.

The food thing is an ongoing one. Arthritis Care recommends a sensible, healthy diet but no particular one. I personally gave up eating meat years ago and feel better without it and I can drink wine in moderation but, if I overdo it, it goes straight to my joints. However, we're all different and what works for one doesn't for another.

wall1409

Hi perasperaadastra and a very warm wlecome

You have definately come to the right place. These people are wonderful, very helpful, kind and funny. Its like our own little club where we can moan, rant, laugh and cry without being judged or worrying we may upset our loved ones.

Take care

Wendy xx

bubbadog

Hi Astra, Welcome to Arthritis Care Forum, you have come to the right place, I'm sure all the members with the same type of Arthritis will give you advice and help. Hope you get some relief soon. Again welcome Astra to Arthritis Care Forum.

mike26

hi perasperaadastra ... I to have psoriasis arthritis
and had it for about a year or so, im 60 last june damaged my shoulder
and it semed to flare up from then.
Pyizio said prob damaged my rotary cuff mustle but have to wait till my inflamatry arthritis is brought under control.
on methotrexate at presant, takes about 12 weeks to see if works or not.
had to stop working ..like you i get angry sometimes cant take lid of jar or unskrew bottle(things that used to be easy so so hard now)
anyway im learning to acept my condition and got no choice but to acept
it.(it still winds me up tho sometimes.)
sorry cant be any use to u but i do no what its like :roll: :roll:
keep chin up mike26....good luck..

acheyaudball

Welcome Astra
Not got same condition as you but I'm 42. I have congenital hip dysplasia that has caused is too in my joints. Also have underactive thyroid and asthma. And find it a struggle with kids, five between 23 and 4yr. 2grandkids and work.

Welcome. x

Nicchick

Hi Astra!

I'm 41 and had my first bad flare when I was 37 and until recently they suspected PsA but recently changed that to RA despite my having psoriasis as well!

Sulfa worked a bit for me, it brought down the inflammation a little but my then consultant decided that sulfa never works and moved me onto methotrexate which kinda worked for a while but last February I started flaring again and now I'm on Humira and a low dose of meth.

This disease is so difficult to negotiate and although I currently have no inflammation pain I get a lot of pain in damaged joints and I only know a handful of people in my age group who also have inflammatory arthritis or crohns.

Luckily my boy is almost 19 so can (sort of) look after himself now. I have a standard set of answers for people who ask me why I'm not still working at my old job and/or why I'm walking with a stick - shark attack for the stick BTW! Without many exceptions diet will come up and a gluten-free diet is enthusiastically advised.....I smile sweetly and explain that no sandwich tastes so good that I would put myself through such pain! I feel a healthy diet is good for everyone, sick or not and have only noticed that if I have a cider or a white wine the acidity can affect my joints but only very slightly. I do tend to go for a Merlot as I'm sure I read somewhere that it's less acidic than other varieties

Welcome to the forum, these people are great! Got me through a very tough time with great support!

Nic x

dreamdaisy

Hello again, I've just re-read your post and you are going through a tough time, aren't you? I've been on sulph for over ten years now, it doesn't touch the arthritis but it does help to keep my skin clear of psoriasis. I am on some other meds too but it took quite a few years to find the correct mix for me.

As I said before I started with a fat left knee and over time other bits joined in. I was initially classed as an 'inflammatory arthritis' case, but when in October 2006 some psoriasis appeared I was immediately re-labelled as having PsA. That, however, changed nothing in terms of medication.

I have learned over the years to pace myself - I always stop when I think I could do more and I rest in between each burst of less-than-strenuous activity. I am fortunate in that I only have myself and my husband to look after (I began aged 37, now I'm 53) and I have had to alter the way I do many things. I now routinely cook, iron and clean sitting down, I have to use walking aids to get from A to B (and the distance between those two points is shrinking every year ) the reason being I have PsA in numerous joints plus OA in my knees and ankles. Pain relief is a difficult thing, it never takes it away and the stronger the relief the more you are taken away which isn't the answer either.

Over time you will develop your own coping strategies and I hope you will soon be offered more medication to help bring this under control. Tiredness is a factor with all forms of arthritis and it should not be ignored. Rest is essential as our bodies are under some strain with the demands of the arthritis, the auto-immune sorts especially. You might find googlling the Spoon Theory and There's a Gorilla in my House worthwhile as they give very good explanations for friends and family about what difficulties we are facing in our every-day lives. Come and talk to us as well, we're a knowledgeable and supportive bunch of arthritics. I wish you well and hope to 'see' you again soon. DD

Nicchick

DD is our resident (very) Wise Woman and she's quite right about resting when you need to. It's taken me until now to realise this as I'm a stubborn so and so...

I was also a bit rubbish at applying for DLA when I clearly would have qualified - as I was turned down the first time I put off doing the forms again and it was my OH who also has RA who made me by asking me (as he does every day!!!) 'how are you my dear?' If I replied with 'awful' or 'in pain' he would reply with 'time to fill out that form then....'

There's a tendency to be a bit of a trooper with all this business as no-one really *sees* the disease but in the long run it's YOU that matters and the important people around you will agree with that!

Nx

Nicchick

PS

Meant to add that I went through a number of NSAIDs before landing on Celebrex which works marvelously for me and rendered me almost completely inflammation free, not pain-free but at least I could get shoes on again! It can take a while to find what works for you so don't give up!

Nx

dreamdaisy

Wise woman? :? Moi? :shock: Thank you, nicchick but nah, that's not me. :oops: I've been living with arthritis for some time and you learn stuff along the way. I've gained a great deal from everyone on here about what and what not to do, we help each other by passing on the stuff we know, that's what it comes down to. Learning and applying it to oneself though - that's a very different thing - we all struggle with that from time to time. DD

barbara12

Hello Astra
And a warm welcome from me
Sorry I cant really offer any advice but i can offer my support, I am so glad you are getting things off your chest its such a big help.
I do wish you well with everything, and I am hoping you get the help you need very soon xx

noahjojo18

i am very sorry for your situation. i am not a doctor but what i can suggest you is to take treatment of natural herbs. Hope you will be fine soon.

Leo

dreamdaisy

Hello again, how have things been over the past couple of days? I've been thinking of you and I hope you are feeling at least a little better in yourself. DD