FRIGHTENED SCARED WORRED FED UP AND DOWN RIGHT GRUMPY... - NRAS

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FRIGHTENED SCARED WORRED FED UP AND DOWN RIGHT GRUMPY LIL B!+€h ??

11 Replies

Morning,

I need to get this off my chest you are the only people who understand

I had a Sleeve gastrectomy in December I've lost a substantial amount of weight, (11.8 stone) which I'm happy with however (unsure if related to surgery) my RA is just awful at present, DAS Score 7.1, it feels like every joint is awful, swollen and very sore, I really thought that loosing weight would have helped.

I am taking methotrexate sc 20 mg about to start cimzia (I thinks hats the name) I can only tolerate liquid pain killers since surgery and NSAIDs are a no no.

I cried this morning as I realised dispite my alarm going of, I didn't have to struggle into work, as my consultant has advised me to have time off, I am sure my manager will be very unhappy with me but i physically cant continue like this. I'm frightened and concerned that this will never be under control and I'm realistically not going to be able to continue in my job for much longer. I'm 38 yet feel 98 most days. Reluctantly I shall use my crutches it just make me feel like I'm advertising the level of pain I'm in, showing a weaknesd and even feel like I'm loosing the positivity battle with this blasted condition.

Cheers for listening

Cara

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11 Replies
sylvi profile image
sylvi

Oh Cara, i know how you feel this this morning as i feel much the same. YOu are struggling and you are still recovering from surgery so don't be too hard on yourself. YOu are starting cimzia shortly so you will be able to tell me how you get on with it as i am waiting for the drug myself. I am going to do a blog myself this morning and you will see i am feeling sorry for myself as well,but it will pass for both of us Cara it really will. I am putting it down as i feel when i have written how i feel it will ease,well thats my thinking anyway. I am sending some hugs for you Cara.xxx

in reply to sylvi

Thanks Sylvia. Sending gentle hugs back to you. Do you have an appointment yet?

sylvi profile image
sylvi in reply to

I have had the assessment and now its just a waiting game until i get them.xx

in reply to sylvi

I hope you are not waiting too long. Who knows we may start together. Has the funding been approved?

sylvi profile image
sylvi in reply to

Thats what i'm waiting on. What area are you living in,i live in the midlands.xx

in reply to sylvi

We have the same PCT I'm in bulkington too. Have u been to uhcw yet?

sylvi profile image
sylvi in reply to

Yes i have,was down there wednesday for my knee and the assessment. If you want to come round for a cuppa today message me and i will give you my address.xxx

Cara I really hope the Cimzia makes a big difference to you and then you can start to enjoy the enormous weight loss you have achieved with your operation. I have only lost 4 stone by diet and exercise but that feels like a big change to my whole being.

What I wonder is how weightloss affects us psychologically and physically. How does the body adapt to its new lighter form and what took us to the point where we became so big to begin with? Are you getting counselling or therapy to address this I wonder? I'm not but I feel it would be helpful if I was sometimes.

The weightloss did help me with my RA because my knees haven't been affected for almost a year now, but I know that I need to keep going with exercise and weightloss and I'm finding that increasingly hard as I'm struggling with gastric troubles and MTX side effects. Perhaps this doesn't apply to you too but I feel that there is a lack of support for people with RA where I live - living with a long term disease and trying to keep weight off and help my body adjust to its lighter self is very difficult.

Hoping that when the Cimzia works its wonders on your pain and inflammation you can address other stuff better and this will help you as injectable mtx has helped me to an extent. If I don't do daily exercise I really suffer now but being in pain/ flare makes this much, much harder I know. Would it be worth making an appointment to see your GP and discuss pain management and possible therapy if you aren't already getting these perhaps? X

Hi tilda

Thanks for your reply.

You raise a very valid point re counselling I was very lucky because my weight loss was surgically initiated I had had 5 years of input about eating habits and the psychology of eating or not as my case is, I found this to be very helpful, one thing that is difficult is the body image changes.

I'm off to my GP today to discuss pain management I saw the rheumatologist yesterday who firmly recommended strict rest reluctantly I've listened and intend to do as I'm told for once.

Yes rest is essential but I find it really hard - but I don't have a rheumy nurse and no one tells me to rest apart from on here so I tend to just wait until I collapse in a puddle! Glad your surgery was all done properly - I worry that some people have surgery to lose weight (gastric bands etc) without having the counseling to establish reasons for weight gain etc. I think it would be like pumping an anorexic person full of calories and force feeding them without getting to the bottom of the anorexia? I hope your GP helps with the pain management. Let us know how you get on please. Tilda x

Codeine phosphate liquid with calpol. Should help a little more :-)

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