Hello im new and need advice

Hi im new to this site was diagnosed with R/A fybromyalgia and osteoparosis 2 years ago ive had infusions for my r/a and osteo after trying various drugs i now take sulfasalazine and humira injections i am in acute pain most of the time ive been on the injections for 6 months is anybody else on this medication and if so can u tell me how long it takes to work ive had to wear slippers for the past 2 years as my feet r that swollen i cant get shoes on my r/a came on really quickly i had some pain in my foot and 6 weeks later i was having fluid drained from my knee i am devastated by this disease as i can only walk very short distances that is when i am able to walk at all can anyone give me advice i dont know all the technical terms for the treatments i have my bloods done fortnightly and last week my imflamation levels were 91 i live in the cleveland area and i attend the rheumatolgy department at north tees hospital any advice would be appreciated thanku all

[sylvi]

I think your rheumy will need to add something else to your regime,but what you will have to discuss that with them. I am sending you lots of hugs darling.xxxx

[Hidden in reply to sylvi]

Thanku sylvi thats so sweet of u xxx

[LizzieR]

Hi,

This disease is so awful isn't it? I've gone from running everyday - cross country and fell; wild swimming, horse riding and walking long distance, working full time as a teacher, to using a mobility scooter, being on benefitd and having to be helped out of bed. I'm waiting for a wet room to be put in and a stair lift. Pah! All I can say is enjoy the good days- you will get some! And find new things to do. I'm on a biological too- enbrel- but unfortunately too much damage was already done. Hopefully yours has been caught early enough. Take care, sending you (gentle) hugs x

[LizzieR]

Hi,

This disease is awful isn't it? I used to run everyday- fell and cross country- swim competitively, walk long distance, horse ride and work full time as a teacher. Now I'm on disability, use a mobility scooter and need helping out of bed... I'm waiting for a stair lift and a wet room to be fitted. I'm on a biological too- benepali- but too much damage has been done to my joints. Hopefully they have caught yours earlier. Having said that, enjoyment can still be had! Enjoy every good day you have to the full and find ways to look forward to the bad ( I know this sounds ridiculous, but rest, eat nice things, save films or books etc). Don't be put off using things like mobility scooters that will allow you to get out.

Take care xx

[Hidden in reply to LizzieR]

Thanks hun but people keep talking about goid days i never hav a good daymy feet r constantly painful as is my back and knees my hands r painful too but a couple of weeks ago my left hand went into a sort of cramp i was screaming with the pain i take morphine tablets twice a day and also hav oral morphine to take when i need it along with paracet and ibuprofen i take pregablin coz i get that anxious is there a time when the pain lessens ive had a wet room installed coz cudnt get in the bath when i was first diagnosed i didnt claim dla as it was then for 18 months coz i felt guilty ive always worked and felt so frustrated that i cudnt work

[LizzieR]

Hi,

I know what you mean. I have different pain days- I always have pain. Bad days are screaming and swigging from the morphine bottle and good days are still full of pain. I too feel horribly guilty over not working, but as someone on here told me, guilt is a useless emotion so I try and let it go. I'm on citalopram for anxiety and OCD. But- things will get better for you. I'm learning that you can be happy even when the pain is incredible. ( though I am naturally a horribly optimistic person! My wife says I am rose-tinted to the core!)

[Hidden in reply to LizzieR]

Lol i used to be an optimistic person but now im a pesimist i think it has alot to do with my consultant he doesnt seem to believe the pain im in and just seems to base everything on how much swelling there is if i use a wheelchair the swelling goes down a bit but as soon as i walk its back and nothing seems to work for me i had 3 infusions in one week which helped a little but steroid injections or tablets dont help at all im sorry for being so negotive i wish i cud see the light at the end of the tunnel and im glad u r now being optomistic hav a good day and thanku for ur replies and say hello to ur wife for me who is obviously a great support for u

[LizzieR]

Never apologise for being negative! You sound lovely. Take care x

[Gnarli]

Hi moyaelizabeth and welcome to the gang. I have found this forum to be a lifesaver crammed full of lovely, informed and compassionate people who know what living with this horrible disease is like. If you need to have a rant, a moan or need answers there is always someone here to talk to. Wishing you better. Hugs

Jan

[Tinkerbell5]

I also suffer with my feet very bad I've been Of work since February I have synovitis I find sketchers bearable but get blisters now been told I've lost fat pad in feet all the best to you x

[Roz1955]

Hi. I don"t know if any of you are aware but CBD is now TOTALLY LEGAL in the UK (it's Cannabis with the THE which makes you high totally removed)

People are singing it's praises for pain relief in particular for r/a, osteoarthritis, fybromyalgia and so much more.

There are two very helpful groups on Facebook, CBD Consumers UK/EU and CBD Users UK.

It is confusing a's there are different types and it's important to use a reputable company.

I'very just started but have been told it may take a while to kick in.

Hugs xxxxxxx