Just joined this site, as I am looking to make contact with other people with RA. I was diagnosed over 10yrs ago..and my symptoms have worsened quicker than I expected...RA has affected most of my joints, my feet and knees, being the worst..Which makes it increasingly difficult for me to get around.
Because of this, I find myself stuck in my flat (I live alone) with only my precious dog for company..more often than I would like.. which leads to a very lonely and isolated life.
So I am hoping by joining this site, that I will make contact with other people, who can totally relate to what I have to deal with on a daily basis.
And we can offer each other help and support..
14 Replies
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Hello and welcome to the club, boat whatever you like to call it! You will find likeminded people here who will be able to support you. We are unable to give medical advice as we are not medics in any shape or form, what we can do is offer our experiences that we have incurred. I am sure that others will come here to welcome you as well.
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Thanks Georje, Look forward to chatting to you and others...
Hiya Liz460. Well, you've lots of fellow RD'ers you can communicate with now! I hope you enjoy using the site, I've found it so helpful, particularly if I've been in a quandary about a new med. Similarly I'd been diagnosed some time before I joined having been in the shadows following for a while but it's been so helpful to know what I've gone through periodically isn't unusual which can be a problem if you don't know anyone else with the disease, as much as our Rheumy's to their best to help us there's nothing like asking someone who lives with the disease if this is how I should be feeling. I'm coming up to my seventh year & still learning & even though I'm fortunately pretty well controlled on my mix of meds there still can be those days when you just need a bit of a boost & suddenly things don't seem so bad.
I empathise with you having problematic knees & feet, though it's OA having a go at my knees & I've recently been referred to Podietry as I have active disease in my feet which I must say has helped enormously already.
Anyway, I hope you'll feel less isolated from now on. Even though doggies are a comfort & wonderful to have around (we have 3, 1 pictured above!) it's not the same as having someone who can relate to & share how things are for you is it?
Take care & I hope we see lots more from you.
Hello Nomoreheels...I take your login name means, like me, you have had to kick out the heels on your shoes/boots.. I have to say, that dealing with that issue, was really hard for me, as I Loved my Heels...especially wedges..and when Wedges came back in fashion I was mortified, that I wouldn't be able to wear them... all I can do is drool and envy those that can...I may be in my 50's(my mind still thinks I'm 18yrs old), but I would still love to wear them..the fact that I am only 5'2'' doesn't help, the heels gave me extra height.. now in my my flats I feel frumpy and old..
I totally relate to needing other people in my situation to relate to..It is extremely hard for others to get what I am going through..I look completely normal on the outside(tho' I do need a stick to aid in walking). But even with my meds and now I am on a Morphine patch to take the edge off...the pain is constantly with me..and my walking is limited..I need constant breaks to rest..But I can see people looking at me, as if to say, what's her problem..It seems that unless you are in a wheelchair or have a limb missing people do not think you have a dissability.. I find that part hard too..
In fact I find everything about this disease hard..because of the disease and meds, I have a whole lot of other health problems I have to deal with on top of the RA..
Was wondering if other sufferers have the same problems with other health issues..Would really like to know...
We sound similar, I'm also in my 50's though at least half that in my head, I've a couple of inches on you & yes, miss my heels dreadfully but unlike you I can't wear flats. My Pod prefers I wear wedges which is just as well as I have loads, none high but at least it adds a little to what I lack! The trick is to get it so you have the height but the incline is compensated for by the platform. I find Fly Flots are good for that & my Pod agrees except for my mules & clogs, I now have to have an enclosed shoe for support which is fine by me, more shoe shopping yay! I've recently started on the road to orthotics & my recent ones allow me to wear a more fashionable shoe so hoping I'll be able to do some serious retail therapy this coming summer.
I'm on 20mcg Butrans patches, one of my more recently enlisted soldiers in my army of meds, I find it keeps my OA pain reasonably well controlled. My h has been trying to get me to use a stick for a while now & have looked at some but can't quite bring myself to need to rely on one even though I'm not good balance wise. Since getting my Blue Badge a couple of months ago I have even more excuse so I don't think I'll be caving in anytime soon. I'd only leave it everywhere anyway!
My only other health issues are somewhat related, OA & high'ish cholesterol, which is annoying as it's always been good but that's RD for you. Both are catered for med wise & I do all I can by healthy eating but I know many autoimmune conditions go hand in hand so feel I'm fortunate.
RD is very much an invisible disease so I can understand how people can react, especially strangers but that's their problem, if they wish to know I'll explain if not then they can toffee off! We do need to get it out there though & why some of us prefer to call it RD, Rheumatoid Disease, that way the emphasis is on the Rheumaiod & not arthritis which is often mistaken for OA, in itself painful but not autoimmune & damaging as RD can be not only to joints but vital organs too. I've found people have more understanding of what I have since using it, not the aches & pains of ageing they thought it was so that's good, my Rheumy even uses it now after telling her last year! Might be worth a try, you may be surprised.
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Hello and welcome. I too am in my early 50s. Feel rather older just now but I was diagnosed with RA three and a half years ago. The worst problem for me has been my poor toleration of the drugs - 9 months off all of them now and shortly to start another. I appear so far to have a less mechanical type of disease than many here - but very systemic so a bit more like Lupus or Vasculitis - possible with both of these thrown in as secondaries actually.
I definitely suffer from secondary Sjogrens and Raynauds but also from small fiber neuropathy - thought to be part of the rheumatoid disease and hopefully might respond well to immune suppressant treatment when I start the next one. Currently getting over a bout of bronchial pneumonia. I am lucky not to live alone and to have two dogs who are very snuggly just now and keep me moving about.
I hope using this site makes life much less lonely for you. Even for those in relationships with children RA can be a very lonely disease because, as you say, many people don't understand or recognise the systemic nature of it properly. I think the term autoimmune needs a lot more emphasis.
Hi liz460 welcome to the club you would rather not be in but if you have any worries about your RA there are always someone to talk with y ou because o willnly another who has RA will fully understand so welcome
Hi Liz welcome aboard and I hope that we can do something to help relieve your sense of isolation and loneliness over the coming months.
All the best
Ali
So many replies..more than I thought I would get so early into the site...So this is a general Thanks to all who have replied and welcomed me...This is so encouraging, especially seeing others who have the same/similar problems with RA as me.Especially Twitchytoes..I too suffer from Raynauds, in my feet..and it can be an absolute nightmare..I even have to wear socks with my slippers to keep my toes from getting cold even in the summer..And just recently been diagnosed with secondary Sjorgrens, easier to spell than to say..lol...I have said, the problems that occur, because of the RA and low Autoimmune systems can be more of a problem than the RA itself...I am constantly getting chest infections..my breathing has been badly effected..And my weight increase is a real major issue...Some of it due to Meds I am on..but a lot to do with my lack of mobility..I feel like I am in a catch 22 situation..I need to lose weight to alleviate my RA symptoms and breathing problems, but without a lot of physical exercise, I find it an onward struggle.. Feel like I am climbing mount Everest on my bad days..(which have to say, can be more often than good days.)
Does anyone out there feel like they are in a constant flare up...I have spoken to my Rheumy about this and he says, that RA affects people in different ways..and I seem to be unlucky in that area...If I go out(mornings only) I find that I will suffer for this for a couple of days after..I have learnt over the years to pace myself..and choose the days I can meet up with friends, knowing that for a day or two, I will be out of it physically, due to pain and the relentless tiredness that overwhelms me..
Sorry if I ramble on, but it so nice to be able to spill it out without feeling I am just being a moany old mare..Friends and Children just don't get it..
Liz, this is copied from something I was reading only tonight. The article was actually about weight gain whilst taking steroids for PMR but I found it made sense, you may find it interesting reading.
"Unfortunately, one of the recognised side effects of prednisolone is increased appetite leading to weight gain, so finding ways to curb your appetite is important.
Including bulky foods rich in fibre (vegetables, whole-grain cereals, bread, brown rice, pulses) and lean protein (chicken, fish, eggs, nuts, tofu) with each meal will help to keep you feeling fuller for longer. Also, make sure that you stay well hydrated.
Studies have shown that people tend to consume about the same amount (weight) of food each day, but not necessarily the same amount of energy (in calories). So it is possible to trick ourselves into consuming less energy, without feeling hungrier, by eating foods with a low energy density (low calorie content per gram of food). These include foods with a high water content (soups and stews), foods that absorb water during cooking (pasta, rice), and foods that are naturally high in water (fruit and vegetables). High-fibre and lower-fat foods also tend to have a lower energy density. High-energy density foods tend to include those that are high in fat and have a low water content (biscuits, crisps, peanuts, butter and cheese). So make sure that you aren’t eating many of these." Daily Telegraph.
Hi Liz pleased you have found this brilliant site. My brother foun this site for me last October when I found i had RD. it has helped me so much and you can always say what is on your mind and have a rant.
So hope to see you on here too.
Take care.
Carol x x😀😀😀
hi welcome you are now among friends that understand how you feel I to live alone in my flat with my little dog and I know how lonely life can be when we should be out there having fun we have to accommodate this stupid condition of rd but you will always feel better for a chat on here .
Hi Liz460,
Welcome to the site, I hope you find it supportive - it must be hard living alone with this challenging disease. You may be aware that NRAS has a helpline number - 0800 298 7650 - but we also have telephone support volunteers who all live with RA which may be helpful to you. You can request a call with someone through the helpline.
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