in a lot of pain and depressed

cris

Hi all I havnt been on here for ages but after the rutiximab I was ok for four months . Then I got poorly ,they thought it was just chest infection ,but turned out to be very bad pneumonia. The rutiximab had lowered my immune system too much.i was ill for over a year and was house bound,in 2015 I recovered and was put on steroids as I could not have the rutiximab , and can't ever have it again. Methotrexate and hydroxy wasn't working. Hence the steroids .I am still n the steroids . They are work g but stil I some pain. Going to the rhumey Thursday . They said they don't know what they Are going to do about any treatment as I been on everything. Just thought as i was feeling better I would come back and give another update, I have had a few tests done as they thought I had pulmonary fibrosis , but it was the pneumonia .then had a lump n my neck scanned nothing found. Then had my over scanned ,they found a cyst and found that I have gallstones.they don't bother me so they are leaving them alone. I wonder if that is why my urine is dark and smells strong? Will mention it on Thursday. Fingers crossed I get something sorted. And sorry I didn't come back , but I was so Ill . Also had quite a bit to deal with at home family member was diagnosed with cancer, and both of my daughters are getting divorced . So to say I was stressed is an understatement . Will keep you updated
Xx

mig

A hug to keep you going. (((()))) Mig

cris

Thankyou Mig means a lot X

dibdab

Life sounds really challenging, and sad to say these powerful meds we take can have all kinds of undesirable side-effects. I hope the rheumy has some more positive suggestions for the future, but un the meantime I'll add more hugs ((((( ))))).

Deb x

stickywicket

Good luck from me, too, Cris. I think dark urine can indicate you're not drinking enough but I'm sure there are lots of other causes so do ask your consultant. Let's know how it goes.

dreamdaisy

Pain is the natural companion to our conditions, stress and fatigue can make it appear to be worse, as does concentrating on it. I use distraction strategies to take my mind off it, I keep to the minimum of pain relief because it never goes away and the feedback can be useful as a warning that I am overdoing things. I have to provide a urine sample at every appointment with my consultant but it sounds as though you are not drinking enough water, that is the best liquid to dilute things. I drink around three pints of water per day to help my kidneys filter and flush the meds. DD

cris

Hi thanks for the replies and the hugs X saw the rhumey on Thursday, she hasn't put me on anything else ,she says she is reluctant to put me back on the methotrexate due to my chest infections, she says I ave had too many of them to justify it. So steroids for me till well I don't know.and neither does she. But yo add yo it all I now have an appointment coming soon for a work capability assessment. I haven't had the question form yet so don't know if I will have to have a face to face .when I told the rhumey she went ape. She said you cannot go to work have they seen your hands and arms shoulders etc. But everyone has to be changed over I know that , just hope I don't have to go and justify myself , havnt heard good things about the assessments.but we will see , I may even be in the middle of a flare if I have to go , what do I do ?do I go ? Or make it fir another time, it will be very difficult for me to go although hubby will take me.but at least they would see how my RA really affects me when the going is bad .
The rhumey says I gave to ring her secratery and get a letter, I wil write a letter for you if you have to go for assessment, thought that was nice of her.
So till I go back to rhumey in three months time I will just carry on as I am but I am starting to flare a little and she doesn't want me to go up on the prednisalone seeing as I am going to be on it fir quite a while.i am on 5 mg a day .will keep this updated as and when I can , but I will be lurking lol.in the background if only to keep up to date with what's going n with everyone take care al my Ra friends and don't do anything I wouldn't do (: Xx


Oh sorry the dark urine was said maybe I am dehydrated but to get it tested for infection .xxx

stickywicket

I'm glad you had a good appointment. Your rheumatologist sounds to be on the ball. I hope the 5mg pred does the trick for you and of course you must take up her offer of writing a cover note for you. That could make a lot of difference. I would personally regard being in a flare as a plus in such circumstances. I have always refused to play up my aches and pains for such interviews but being unable to play them down is a bonus

As for the urine – just ensure you drink more (water is best) and see what happens.

cris

Hi everybody as you can see I am not asleep. I have been in unbearable pain in my right shoulder spec the elbow,it's been swelled up all day don't know why hope it's not infected. Iam stil on the prednisalone 7.5 now as I was having a few bad flares taking tramadol eight aday at the moment.and arcoxia . Going back to see the rhumey on Monday well the nurse not the actual consultant.but I am going to ask her for that letter she said shewouldwriteas I have an appointment for a face to face for ESA currently on SDA so if I pass s they say I will be changed over to ESA , we are trying to save up for one of those toilets that shower you afterwards, has anyone got on and are they good are they expensive? I really am struggling with toileting these days my arm has shortened itself with the damage to my elbow so everytime I go I have to get in shower afterwards ,are there any AIDS that can help with toileting.i can't seem to find anything on the net.

And if anyone has any advice for my face to face I would really appreciate it I a scared stiff they will try to send me to work .the toileting is going to make it very hard and the pain when I do anything. Fingers crossed for me folks . I'll keep you updated soon.its on the 21 st June .

Cris

stickywicket

I'm sorry to hear you're struggling again, cris, but at least you will see your rheumatology nurse on Monday and (s)he will be able to advise on medication and swelling.

Sorry, I can't help with the ESA interview. Have you looked through the threads on the Working Matters & Benefits forum? Sometimes people tell us how their interviews went for different benefits.

I've not seen a toilet / bidet but I do have a bottom wiper for the very difficult times though mostly it lies at the back of a drawer. You can buy them here http://tinyurl.com/zeo4nfy or, indeed, any decent disability aids shop.

Are you able to use the other hand? If not, why not ask about physio to strengthen your whole arm. It's true that we can end up with shorter arms as a result of all the joint damage to shoulders, elbows, wrists and fingers which is why I exercise mine to keep them as good as possible so that, when the tough times come, they won't be quite as bad as otherwise.

Good luck with your appointments and do let us know how you get on.

tkachev

Hello Cris. I used to suffer from painful elbows and shoulder amongst other joint troubles so know how you must feel. You don't forget living with so much pain. It made sleeping almost impossible and I couldn't lift my arm above my neck line and my elbows were permanently in agony.

I was finally prescribed Humira when they decided my current meds were not doing enough and thankfully this worked for me especially with the elbow and shoulder joints.

Now I know full well that we all respond differently to various meds and I was possibly very lucky and if anything I'm just trying to reassure you that your rheumatologist should be made aware that your still in pain and your current meds aren't helping therefore they should tweak,add or change them.

Hope all goes well at your appointment.

Elizabeth xxx

cris

Tkachev I have been on humid a I been on everything that was ever brought out for Rhumatiod arthritis and that's why I am off the meds there's nothing left for me but steroids I,m afraid .
Cris