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Arthritis Research UK

(17 Posts)
apricot Sat 17-Sep-11 21:31:59

I see this charity has a big advertisement on Gransnet. I'm very cynical about it as I have quite bad arthritis and, as far as I can see, despite a century of research, there are 2 treatments: swallow anti-inflammatories or have it hacked out.
Most old people have some arthritis and I found most of the advice offered was simplistic and patronising, assuming that old age = half-witted.

susiecb Sun 18-Sep-11 07:46:05

Yes me too given up on them I'm afraid! My GP and rheumatologist just say - your stuck with it take painkillers.

Ariadne Sun 18-Sep-11 09:24:08

Yep - my experience too. Am learning to manage it a bit, but it's hard, isn't it?
My knee hurts so much some days. But everywhere I've looked the advice is the same. Mind you, since I arrived on Gransnet, I have discovered Pernaton gel, which is not druggy and really helps.

crimson Sun 18-Sep-11 10:13:57

When my leg was very bad with suspected arthritis I went onto Arthritis Care and found it very helpful; check it out and see what you think [sorry, can't do a link, but you should find it if you google it]. Strange how the weather affects our joints isn't it. As for GP's; in general they're rubbish when it comes to anything except handing out pills, and totally dismissive of any alternative treatment. Having got myself walking again after several months of pain the consultant that I saw [and it took months to get to see him] just poo poo'd everything I'd done to help myself, just telling me to come back to him when I actually needed a new knee.

Annobel Sun 18-Sep-11 10:45:37

I am horrified to hear about the attitude of your consultant, crimson. Mostly I saw specialist registrars who were very good and thorough and were certainly heading for consultant jobs. When I asked one of them about glucosamine he took it seriously and said that it was effective in about 50% of cases. I think I am in the 50% as my other joints haven't (yet!) gone the same way as the ones I've had replaced. Before referring me to the consultant, my GP sent me to a physio at the local clinic who was also very helpful and confirmed that in her opinion surgery was going to be needed. I have found capsaicin gel soothing; it was recommended by my GP sister.

Annobel Sun 18-Sep-11 10:50:43

www.arthritiscare.org.uk
is very informative and the magazine it publishes has lots of information for people of all ages who suffer from arthritis of all kinds. It's by no means solely a geriatric affliction and some of the stories by and about younger people are rather humbling and make me feel grateful that I didn't have it earlier in life.

JessM Sun 18-Sep-11 10:52:53

evidence on the glucosamine is weak. My son the chiropractor tells me that pain experienced does not bear a very close relationship to the X ray evidence and that he helps lots of patients to retain mobility.
The other thought though is - what's the waiting list for op? Because it might be worth putting yourself on it, just in case things change... You can always postpone when you get to the top of the list...

Baggy Sun 18-Sep-11 10:53:26

Having had arthritis since my teens, I have tried a number of 'alternative' remedies/relievers. None worked, so I continue the take painkillers daily. They help enormously and always have. Since I've been taking them for nearly four decades now without any noticeable side effects except the desired one (pain relief), I do wonder why people are so averse to taking them. Perhaps I have just been lucky with no side effects.

I don't think GPs can be blamed for not knowing a cure for arthritis. Nobody knows. Besides, it isn't one disease; there are at least two hundred variations. That's why money is needed for research. Bit by bit more is discovered about causes and how to prevent problems. Other chronic illnesses are the same. There often is no cure — perhaps may never be — but that isn't anyone's fault, just unfortunate.

As an example, after decades of advice about change of diet to prevent heart disease, the rate of of heart disease has not changed. People who have it tend to live longer because of better treatment, but the incidence of the disease has not fallen. The logical conclusion comes in two parts to my brain: the advice is incorrect so far (or at least incomplete) and there is no known reliable cure, only relief.

Use any relief you can get is my approach, but don't go blaming people or being cynical about medical research.

crimson Sun 18-Sep-11 11:54:55

I think it was either an osteopath or chiropracter that really sorted me out. Not cheap but, if I was rich I'd see one all the time. Is it osteo or rheumatoid that you suffer from, Baggy? [sorry, I'm not meaning to pry].

Baggy Sun 18-Sep-11 12:16:56

I think it may be both, crimson. Nobody seems to know. hmm

Baggy Sun 18-Sep-11 12:17:22

Or maybe I have the heinz57 variety.

em Sun 18-Sep-11 21:09:20

Baggy I may be getting back to you for advice! My DD has suffered since the age of 15 (though it took a few tears to get a diagnosis) with rheumatoid arthritis. She takes daily high-powered painkillers and just copes (most of the time). Recently she had a horrid time with kidney stones and was told that doc's couldn't do much as she was already taking maximum painkillers. In the last 6 months my brother-in-law and another good friend (also male) were admitted to hospital for the administration of painkillers and for nursing support while they passed their stones. Meantime DD was left to 'get on with it'. Hoping that recent surgical procedures will help with that problem, but don't know how they'll deal with the RA. She was told that a suggested drug regime couldn't be tried until she stopped breastfeeding but wasn't prepared to give up until she thought GD was ready. Baby is now 13 months and is fully weaned so I hope they can now come up with some helpful suggestions
Do you find changes to diet help?

Daphne Sat 08-Oct-11 18:39:04

I had a hip replacement eighteen months ago, and although the worst of the pain has gone I still have unpleasant feelings in the area of the new hip; also it is pretty stiff, and it aches at night. My other hip isn't very good but it doesn't hurt much during the day; however it is also very stiff and aches at night. I don't intend having another replacement - I'm not that happy with my new hip, and I did not enjoy the experience of having the op. or the stay in hospital. It seems it really is just painkillers (paracetamol) and gel.

Annobel Mon 10-Oct-11 17:48:37

I sympathise, Daphne, because, although my hip replacement has been a resounding success, my shoulder, which was partly replaced five years ago, has almost regressed completely and I am putting off asking the GP to refer me back to the consultant. I am thinking about acupuncture for the pain as I really don't want any powerful painkillers.

vivaitalialm Mon 08-Oct-12 21:01:47

Hi all,

May I take this time to share with you some facts about the support of Arthritis Research UK.

I am a dedicated volunteer for the charity and have seen amazing improvements in the lives of just three of the 10 million people who have arthritis. I was privileged to interview three different people around the country who have relied on Arthritis Research UK in one form or another. They shared with me their stories, and with their stories, I put together a video for the public to see. It saddens me to hear that not everyone feels as though the charity are helping, but I assure you, from seeing it with my own eyes, the charity does their utmost best to support all with arthritis.

Take a look at the video I made:
www.youtube.com/watch?v=OXQ3wQ02mxw

jeni Mon 08-Oct-12 21:42:57

I'm on my third hip now. 2on l one on right. They've been great no problems!

skybluepink Fri 18-Jan-13 10:40:43

Many of these Charities are copying the corporate structure of the business world . We know the problems only too well there with the Call centre & Enquiry lines playing pass the caller .
They appear to have a bias [ to rip off ]as structured by accountants protecting their interest ie: wages not ours . This is such a shame as they have lost their way & dare I say it taken over by the unethical as must know not assisting who they are set up to help .Even the Charities Commisson is equally appalling .
In my case I needed support as GP looking in eye denying diagnosed disability connected to chronic utis - spina bifida - osteoarthritus spasm was being used to hide urgent symptons including excrutiating pain & near spacity being investigated . Did they want to know ?! They should have had the contacts & ability to write a letter of support or investigation. It appear all Charities have attracted those with other agendas.