Feeling unsupported

[lottilou66]

Hi I am 53 was diagnosed with OA about 5 years ago. My knuckles are start to enlarge and are very painful at times, I struggle with my back and my knees and elbows are very sore. My shoulders and ankles also get quite sore. My knees sound like they are full of gravel when I go upstairs my kids say they can here me coming. The only help I have had from GP is to send me to a pain clinic and tell me to take painkillers, (which are pretty useless) Is there really nothing they can do to help me.

[Flyby7]

If I was you get in touch with your gp and really tell him how you feel and say the pains killers are not helping all the best stay safe👍

[Hidden]

If you visit arthritisaction.org.uk/livi...

there are fact sheets to download with tips o pain relief and gentle exercises to help you. Also recipes for arthritis friendly meals. Take care.

[RoadRunner44 in reply to Hidden]

I've checked the links and found them very useful. I have kept a record so that I can return to them again. Thanks Kath, I'd recommend anyone to visit the sites.

Chrys xx😊

[Hidden in reply to RoadRunner44]

Glad to have helped Chrys. XXXX

[Tikaneko]

When I was first diagnosed with PA my GP kept giving me pain relief, sending me to physio etc. In the end I couldn’t even take the lid off my toothpaste. I saw a different Dr who gave me steroids, oh the joy. Within a few days the pains had started to subside and finally disappear. Sadly the pains returned, I went back and asked to see a specialist, luckily he agreed but the waiting list was about 6 months. I went privately it was the best £200 I have ever spent. Within 10 minutes I had a diagnosis, 2 weeks later I had an NHS appointment with him and now 2 years later after experimenting with various meds I am on 6monthly injections which work, it does start to run out after 4 months but manageable. So please don’t be disheartened try again. Ask to see a specialist and take it from there. There is a lot of helpful information and support on this site and Versus Arthritis. Take care. Gentle hugs. 🤗

[Hidden in reply to Tikaneko]

You have to be careful with steroids, the link below outlines the side effects. But it doesn't mention Osteoporosis which is a major problem for those on high doses or long term use. I know from experience.

nhs.uk/medicines/prednisolone/

[Tikaneko in reply to Hidden]

Absolutely, i feel confident in the fact that i am closely monitored and my consultant feels it is a better to have treatment 6 monthly than daily. I have regular appointments with him.

[Peacelovelight]

Hi

I so feel for you as I am in the same position.

~I also have Cervical Dystonia and Dysphagia to deal as well, which I wouldn't wish on anyone..

My GP has given me Tramadol and Naproxen. He said no need for x-ray as he knows I have

OA in hands and neck and knee. Never got a chance to show him my toes which are

curling up!

The best bit was when he said........................do you realise how old you are???.........I'm only 61!

When I said I was finding it difficult to cope with everything he said.................Why do you feel like that??????????

When I came out I felt like giving up and very deflated!

I hardly ever go to the GP and am a very strong person but sometimes you just need

a bit of support and a caring ear instead of being made to feel like a nuisance

Wishing you love and light and I hope you get some help x

[lottilou66 in reply to Peacelovelight]

I am lucky that I can carry on my day to day life. It just gets me down. Some days I wake up and think for gods sake just one morning let me wake up pain free after a good nights sleep. I have a son who has been through far more than me and is in pain constantly and it makes me feel guilty to complain. Sometimes life just gets you down.

I know I have so many things to be thankful for. A great husband amazing children and grandchildren. I am lucky enough to have enough money to pay my bills and a little left over for luxuries like a holiday each year. There are so many people struggling especially at the moment. Mostly I have a smile on my face but days like today when I’ve slept 4 hrs and everything aches it’s just hard.

[Holdingbacktheyears in reply to Peacelovelight]

I feel the same as you xxx

[katieoxo60]

Sadly Lottilou66, this is about the best the Gps can do . I cannot walk with my knee but I have been told the only answer is joint replacement, its taken 12 months to get this far and because of coronavirus even an op is cancelled so back to increased painkillers. I am a member of Arthritis Action local face to face group, also Versus Arthritis but there seems to be very little new ideas on offer except CBD oil & capsules. The pain clinics seem to favour tablets in fact paracetamol is their mainstay just like the GPs .I find keeping a little active everyday helps, stairlifts are one answer, avoiding steps is another, heat pads ect its a case of using multi options. I had someone shopping for me but they stopped as soon as coronavirus came on the scene, cleaners are not allowed in my house & I have no carers so like you I feel that there is no help available. I found some of the creams although expensive do work marginally. Saunas are another option if you can afford such things. Have a look at Arthritis Action Charity site there are lots of things on there. Wish I could give you a ray of hope, but it is very much trial and error to find what makes you feel better, Tumeric is a cheap additive to food that works for some also. Best wishes for finding something for yourself that reduces the symptoms at least.

[lottilou66 in reply to katieoxo60]

Thank you. I am trying to exercise more. Scared of not being able to get back to work when this is all over. I work in a busy tearoom so on my feet all day. Will have a better look at my diet. Keep safe.

[katieoxo60 in reply to lottilou66]

I used to work in jobs on my feet all day in service industries and NHS , council ect . That's why I find it hard to keep walking and no doubt you do too. Fortunately I don't have to work now I am retired but I did work with my illnesses till I was no longer able. People do not realise what it is like to work with constant pain and difficulty doing everyday things that many take for granted.My thoughts are with you and hope you can return to work as financial worries do not help your health issues.

[Mrstarlord]

If its anything like me. Having a nice hot bath helps. No alcohol as this sets it off. I would get a second opinion if I was you. They need to give you test to see what the underlying problem is. Till then drugs and rest and if you have a knee brace, strap it up for a week to help take the strain off. 😐

[Romey1]

Hi lottilou your right the pain clinic do nothing. I've bee going there for years. Like I said I really do believe that Drs dont understand the pain and the isolation it can do to someone. Your quite young to have OA as am I. Well my DR tells me that as he is telling me there is nothing he can do . I really don't believe in 2020 they cant find some sort of pain relife there just not trying. My knee is so bad he said I need a new knee . Is he going to replace my fingers two. I dont think so makes me very angry. I hope you feel a little better its it is 2.35 I am wide awake in pain again. Cant remember the last time I had a full nights sleep. If

Night x

[MrFunnel]

In a similar position my self I had a microfracture done on my ankle after it was diagnosed with osteoarthritis and 7 years on its worked wonders but shortly after my knees went. Had arthroscopies done on both and then in August a high tibial osteotomy done on my left leg and was due the same procedure on the right any time now. The right knee is twice the size of the left now and has been drained 5 times by my GP. Had a meltdown on the GPs as they wouldn't consider putting me on anything else but Co-codamol and Meloxicam. They've referred me urgently to the consultant and pain clinic for help but due to the pandemic hospitals are refusing outright any such referral. Another GP called me later on in the day and has changed my medication and put me on an antidepressant. Mood has improved for now but I have so much to think of as I've type1 diabetes but now am undergoing treatment for type2. As well as hypertension and hypothyroidism and at 46 with a young family things do get me down and the stress of this all isn't doing any favours for my control of diabetes or my weight.

[arthritis_action Partner]

Hi lottilou66 , sorry to hear that your osteoarthritis is causing you such pain at the moment.

Our website has a number of free information and resources that have been designed to help you managing your condition yourself, using a variety of methods to address both the physical and mental impacts of arthritis. These may prove useful while you wait to see your GP again to talk about your condition further.

arthritisaction.org.uk/livi...

arthritisaction.org.uk/livi...

We also have a dedicated COVID-19 advice page, offering advice, ideas and tips on how to stay well and continue managing your arthritis while self-isolating, in case this helps you during this time.

Let us know how you get on in the coming weeks.

[rubina786]

I agree after a few years of trying whatever they gave, I believe nothing but prednisolone worked for the pain. I now manage without painkillers and with just 2.5 mg a day (max 5mg). Agreed it has its risks ...but better than not being able to move at all. (Just my opinion based on my own experience).

[lottilou66 in reply to rubina786]

Just been looking at the side effects. It’s like going through the menopause lol

[rubina786 in reply to lottilou66]

Haha! My mood swing was sheer joy.

Uggh..a rounder face but made the skin look less wrinkled lol! So not all bad! Lol

Taken up exercising my face too!

Must admit, keeping the weight down as you feel hungry is ongoing and some sleepless nights even with the small dose I am on!

Your GP may not agree to prescribing it due to long term and serious risks.

I had to fight for it after 2 years of agony.

Am 64 now but was bent over in pain like a 90 then so was prepared to take the risks! With the right foods I can get away with just 2.5mg a day.

Sadly with the lockdown my paleo gluten free type diet was out the window, so back to 5mg a day and a tiny bit of swelling on one wrist.

Had to have wheat

Sugar, milk and wheat have been triggers for me. (Like poison!)

Hoping you find what suits your body soon. It took me a few years of pain, trials and many errors to be functional again. Xx

[Kneesandtoes]

Hi lottilou66, Sorry to hear you are in so much pain. I had swollen and painful finger joints in my late forties. I was also concerned about breast cancer and read that in America polyunsaturated fats had been linked to this. So I stopped using spread and sunflower oil choosing instead butter and olive oil. Gradually my finger joints returned to normal. Later on I read about inflammatory foods specially the omega 3 an 6 balance and realised that there could well have been a connection. So much more is known now about inflammation, gut health etc. Try the site clever guts. At least with a change of diet you are not doing any harm and if it works you are actually healing yourself not just masking symptoms.

I have not found that the GP had anything to offer. A chiropractor helped with injuries that would have turned into arthritis and I go for a preventative pummel every three months. Good luck