Diagnosed with Rheumatoid Arthritis...........house falling down around us!!

ShelBell

oooh LameWolf I have Lupus too

My DH couldn't find the hoover let alone use it when we first got together (mummys boy), but he has learnt to adapt. Sometimes he goes a bit OTT, like when I had surgery recently, or when he starts telling me like a small child to go to bed, but I know it's cos he loves me so much so I bite my tongue (mostly) and put up with it.

LoopyLinz

ShelBell wrote: »

oooh LameWolf I have Lupus too

My DH couldn't find the hoover let alone use it when we first got together (mummys boy), but he has learnt to adapt. Sometimes he goes a bit OTT, like when I had surgery recently, or when he starts telling me like a small child to go to bed, but I know it's cos he loves me so much so I bite my tongue (mostly) and put up with it.

Right with you on that one!! Was trying to explain to DH last night that I was more than capable of pulling the duvet over myself last night and that as nice as it was I didnt need to be tucked in so tightly that I wouldnt actually move! Lol!

Penny-Pincher!!

ShelBell & LameWolf....I didnt realise you both had SLE too. I also have a very supportive OH but I agree that it takes time for them to adjust sometimes.

PP
xx

LameWolf

LoopyLinz wrote: »

One day, and one thing at a time is what I am planning! Have an appointment with my own GP next week, would I look like a wally if I went in with my notebook of questions and DH?! Dont really want to go on my own as I can never remember what he has said when I come out again! lol!
Linz xoxox

No you absolutely would not look a wally. I do this all the time, and in fact any doctor worth their salt will encourage you to do so.

kirstyreanne

Hi,

My auntie has a particularly bad case of RA & because she has no spleen (from having hodgins disease when she was younger) is limited in the medication she can take. She manages by using ready chopped or frozen veg etc on bad days & while they may not be OS they definitely have their place.

ShelBell

Penny-Pincher!! wrote: »

ShelBell & LameWolf....I didnt realise you both had SLE too. I also have a very supportive OH but I agree that it takes time for them to adjust sometimes.

PP
xx

SLE, fibromyalgia, psoriatric arthritus, interstitial nephritus, iritus, uveitus, postoral hypotension, shall I go on?

These days hubby likes to play the martyr a bit when I ask him to do something for me, but if I move to do something myself he jumps up :rotfl:

popularfurball

Sorry, not great on the cooking side of things... but RA is most common in females between early 20s - mid 30s for primary diagnosis. I hope you have been given some lit about it? Its a good idea to understand the condition, but if reading around it - don't get hung up on bad bits and other potential complications - that'l only increase the chance of getting down in the dumps - keep up with the optimism

RA is an inflammatory condition - generally related to joints. The quickest ways to reduce swelling is anti-inflams and rest... However, not complete rest - just the affected area. The more it is rested, the less it is continually aggrevated so minimises the amount of chemicals produced in turn minimising the inflammation. Also, this is theoretically only applicable to the first stage of acute flare up.

If your hands are affected, try getting some bulky plastic cutlery (perhaps not elegant, but easier to hold - ikea do some, and its not as cold as metal cutlery), stick to pull on clothes, non laced shoes - reduce the need for fiddling. On good days keep everything as mobile as possible.

What about keeping a journal?? Eg. weather, food, meds, sleep, activities - that way you could perhaps see patterns and learn whats betters/worsens it for easier management? Good luck & with that spirit you can only be admired

Peartree

parsonswife8 wrote: »

Shame Linz, 24 is very young to be diagnosed with that!

It isn't. Rheumatoid arthritis is a completly different disease to the what most people understand to be as rheumatism or arthritis. Osteo-arthritis is problem related to 'wear and tear' on the joints we get from the ageing process. Rheumatoid arthritis is an auto-immune disease that can affect very young people and there are juvenile forms of the disease. My late sister had rehumatoid arthritis from her teens and it is a massively misunderstood disease, even amongst GPs. Many of the posts on this thread reinforce how the incorrect understanding of this disease - although most are quite the reverse!

I'm sure you have been referred to a rheumatologist but it would be a good idea to contact Arthritis Care for support and information. They also have groups in most areas RA is also one of those diseases that is a whisker away from being if not 'cured' but certainly well managed. It is well worth doing your research, pushing your rheumatologist for the latest stuff (and even to get on trials). However, from my sister's experience, GPs are not up to date and you may have to be your own expert. Don't hesitate to have your notebook when you get in that surgery and don't leave until you are happy with what he/she says!

My sister was diagnosed at 17 and had severe RA. She is no longer with us, but not because of her RA. However, she was very active (despite two hip replacements), travelled, had a career as a senior civil servant and managed her life with a minimum of adjustment and probably had less sick leave than many of her colleagues over the years.

Do as much as you feel you can, when you feel you can. Get that freezer stocked when you feel good! Get the aids you need (chunky utensils, electric can-opener and the like). Stock up with a few packs of frozen peas -good for painful swollen joints. But work out what is best for you. But my best advice is to do your own research (through credible sources) and be assertive when dealing with the medical profession! And remember your mental health is as important as how you feel physically.

amanda40

I am with popular for on keeping a journal - When I first went to see Rheumy I wrote everything down and took it with me. When you have a few bad days and cant do a thing ( including pulling up duvet - DH had to do it for me), once you get over it and feel better you forget just how bad it was , so tend to underplay symptoms when at rheumy - but they need to know the worst days too.

As other posters say it is not all doom and gloom. My RA gets me down, but the days when I am feeling well and we can all do things as a family ( long walks and sand sledging was a fav day) makes me glad and I appreciate these days far more now. We went to a theme park in the summer - I had had a steroid injection so felt fab and it was great to be able to do all that with the kids. when a month before I wouldn;t have been able to walk ten minutes without a break.

Another trap I used to find myself falling into wasonly taking pain killers if I really needed them - but now I just take them and have less pain - no use being a martyr if you dont have to be. A wee tramadol before bed gives me a great nights sleep!

I pace myself and my kids and hubby are great - I couldnt do it without them!!

LoopyLinz

amanda40 wrote: »

I am with popular for on keeping a journal - When I first went to see Rheumy I wrote everything down and took it with me. When you have a few bad days and cant do a thing ( including pulling up duvet - DH had to do it for me), once you get over it and feel better you forget just how bad it was , so tend to underplay symptoms when at rheumy - but they need to know the worst days too.

As other posters say it is not all doom and gloom. My RA gets me down, but the days when I am feeling well and we can all do things as a family ( long walks and sand sledging was a fav day) makes me glad and I appreciate these days far more now. We went to a theme park in the summer - I had had a steroid injection so felt fab and it was great to be able to do all that with the kids. when a month before I wouldn;t have been able to walk ten minutes without a break.

Another trap I used to find myself falling into wasonly taking pain killers if I really needed them - but now I just take them and have less pain - no use being a martyr if you dont have to be. A wee tramadol before bed gives me a great nights sleep!

I pace myself and my kids and hubby are great - I couldnt do it without them!!

Thanks Amanda, makes it seem a million times better somehow to read how you lead a relatively 'normal' life if you know what I mean?!

Now this is going to sound really stupid but when you say you kept a journal, just detailing how bad the pain was? Where it was? That sort of thing, or did you detail things like what you had done that day to see if you could find any sort of link? Also do you think it would be worth keeping a food diary to see if there is a link there?

xoxoxox