I’ve had severe RA since 1996. I struggled on working until the end of 2004 when I had to take early retirement from a high stress and well paid job, aged 55. Am I alone in being fairly “Grump” when I read posts like “now I’m on Whatevermab I’m doing a Charity climb of Mount Everest, a Triathlon and the London Marathon this weekend” or “I’ve started eating raw slugs coated with creosote and The RA has totally gone away”?
To my sensitive soul this interprets to “You’re not trying hard enough. My diet is the only way to approach RA. Throw away all your pills and potions and cut out breathing, and follow my latest fad diet because it worked for me”?
In my early RA years I read every book, article whatever on RA. I tried numerous diets and hippy treatments - the worst was probably Kombucha (look it up)!
In my 22 years of attending Rheumatology Clinics for numerous both in and outpatient appointments/stays I’ve only met one patient who went into complete remission on Rituximab and has stayed that way (no raw slugs either).
Over time I’ve learnt to cope the best I can with a tough illness. I’ve never given up. Have tried numerous 1st, 2nd line drugs and numerous biologics plus new drug trials, no Silver Bullet yet.
Please don’t tell me I’m the problem because I’m not on the “Euthanasia Diet or pushing myself toward Olympian exercise heights” as I bruise easily.
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Leviset
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I feel the same.. since diagnosis it has been a constant battle and struggle.. I have tried many drug combinations and am now on my fourth biologic and whilst I am in awe of people in remission I definitely can’t see the light any time soon. So we battle on, keep trying the next drug that gets offered (Think positive it’s the “one”) and don’t give up. If you want to be grumpy then you have every bloody right to! Sarah xx
You said it Sarah....we battle on....either that or we become moaning Minnie's or Mikes & make ourselves feel even worse than we are.
I refuse to even try Levisets' (no doubt delicious) culinary descriptions.
Obviously if something really makes you ill or you don't like it.....don't eat it.
But neither I nor my very experienced Rheumatologist have ever encountered a proven remission from diet.
I feel a lot better than I did 5 years ago, & had I being dining on Slugs ála
Créosoté.....I would no doubt be telling all they put me into remission,
But did I have full clinical tests 5 years ago,& regular consults to prove that? No! & neither have any of the people who claim such a remission.i am very pleased it happens for a few, but the rest of us just have to make the best of a bad job, & just hope tomorrow is better than yesterday!
I'm writing this absolutely shattered from cutting down the ivy around a window-......with my new levered cutting Shears.....I still have to take the cuttings to the gardening tip-if I can raise myself from my bed ,
But who cares if I do it tomorrow....after 20 years of this ruddy disease I'll do what I like!
Hi fellow Grump. I am truly thrilled for those who have found something that's given them their life back. It warms the cockles of my shrivelled heart but, oh, the envy. Only diagnosed two years ago I'm a relatively speaking a newbie and still haven't come to terms with it really. My mind still keeps writing cheques my body can't cash and I resent it. So, you're not alone in keeping up the struggle despite everything and please can I join your gang No Slugs Included?
I can't count the number of times this forum has ended up in civil war over raw slugs or the equivalent, often because the subliminal message that if we're still suffering it's our fault drives people wild. So no you are not alone!
I always feel hugely guilty that I seem to be someone who takes to toxic drugs like the proverbial duck to water (long may it last and I don't want to tempt fate). I can't imagine how depressing it must be to try all these things with no relief. I hope the next one will be your magic potion.
(Having said that, we can't actually ignore that it's good for your health to follow basic lifestyle good practice - but raw slugs are optional)
Aye Levesit Grump away any time you want as having this disease gives you the right to do it, I remember years ago when I was a bus driver and went to pick the school kids up and there was this Janitor who would growl at anyone sometimes and I thought Christ get a life, well 4 years ago when I got lumbered with RA I totally understand why he was Grumpy at times because he had RA and had to retire early like me at 54 so when people ever say oh your a bit grumpy today I just say well if you had RA you'd be grumpy as well sometimes then make my good byes and go on my merry way, no point trying to explain as all you get is oh my fingers sore or my Knees sore today? If only they knew what we have to put up with some days but they just don't understand how this disease can grind us down some days
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You won't have happened upon them as they were predominantly before you joined but we have had... ahem... discussions about diet & meds frequently, sometimes becoming so heated the administrators were forced to close the page to further discussion. Recently though we have a happy group, the members who have started conversations on 'alternative' ways of treating have been more accepting that we each have our own way of treating, some with food & supplements others with medication (one or two with both though the tendency is one or the other). How we choose to treat the disease is one topic that divides more than any other I think, it's personal choice & as long as that's respected & it's understood when others don't follow their lead it's fine. It's so much more pleasant, even comfortable, we don't need to be mindful of passing by posts that don't interest us or if we do comment be concerned that our views will be misconstrued. Long may it last.
I do wonder how many of those who have chosen to treat with diet (yuk to Kombucha... anything fermented deserves to be buried, deep) & no longer post here will in time need the help of meds, though I doubt we'll ever know. They seem to, in the words of Ms Rowling, disapparate.
We also have off topic conversations which often lighten the mood, though there have been some who disagree with this & have decided that we should limit, or even they have no place here. Well, I think the majority have decided that talking about our conditions, limitations, medication can become too much. Of course that is their prerogative, they don't need to join the chat if they prefer not too but I think it often lifts the mood.
There's no doubt in my mind that a good diet & suitable exercise is conducive for RD & other issues that often tag along for the ride. As long we are accepting of each others choices then we'll all rub along nicely.
The only thing I can agree with is a ‘sensible’ diet and fitness regime. As the majority of us RAs will die from heart or lung diseases I eat the right things that might keep my heart strong and to keep my weight down. 15 years ago I went up to 16 stone, I’m now 11st 6ibs. I changed my diet because the extra weight load I was putting on my already damaged joints. I’ve had empyema surgery to remove nodules from my lungs - I’ve gone from having 57% SATS to 98% SATS. Both of these changes were to make it easier to walk and breathe NON of the changes were done as an attempted “cure” for my RA.
What a great post!!! I have massive guilt trips about being a grump, but like you I haven't yet found a magic bullet....and I do get so fed up of being grateful to others for doing things for me that once I used to do for them. Marinated slugs never did it for me either!
Thank God for a sense of humour.....that can survive RD
I get it! In my 47 years of attending Rheumatology clinics, I have never come across anyone in remission and its exasperating when you see yet another new face in clinic who starts from scratch, have you tried X, Y & Z? Then most of the appointment is wasted explaining the last 47 years in a nutshell and you end up coming away with nothing, all you've had is a chat!
Well I don't think you should be grumpy because someone has managed to do a big walk or swim the length of a river etc. You don't know what it took to get them to that point. However, I do get the whole lick the belly of a horny backed toad and you'll feel better thing. Or eat you own body weight in turmeric and your arthritis will disappear (I get that all the time). It makes me want to kick the good willed person up the backside.
As for give up? Well now sometimes I feel like doing just that! The drugs for this disease are often savage, which adds insult to ruddy injury. However, I'm only 56 and there's an awful lot I haven't seen or done yet.
I climbed up a hill recently. Did it hurt? Too right! But I plan to climb up a mountain soon.
You're entitled to be grumpy. I've been grumpy quite a lot. I'll probably be grumpy a bit more, but inbetween all the grumpy I plan to do some living...just in case things go belly up and I can no longer do what I want to do.
I look after a dear chap who has an awful progressive illness. I have watched him go right down hill over the last year. He is wheel chair bound, and can no longer wipe his own bottom. He us totally dependent on others. Having watched this lovely bloke suffer, I don't really feel I should stop trying to do stuff. I will almost certainly regret it.
dunno what to say to that... feeling the pain... am also almost wishing i'd never mentioned turmeric, or keffir, or raspberries , or plastics etc etc. wasn't meaning to proselytise tho', just sharing
Hello Grump, thanks for making me laugh. I am one of the lucky ....mab remission cases (sorry Gnarli) and so never had to resort to crazy measures. You certainly aren't the problem and doing the best you can is very admirable. Keep in touch. All the best.
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