Jo's story

jmartin

Hi all,

Here's my story:

I've had a pain in my knees for as long as I can remember which is related to changes in humidity. That I could cope with.

Three years ago I fell down the stairs and broke my ankle. I was told at the time of having the stookie taken off that I didn't need pysiotherapy and I should expect to suffer from arthritis starting within 5 years. Six months later I started to suffer from severe pain in my ankle which just last year I noticed went away when winter was over. I tried and tried to get the docs to agree to re x-ray my ankle to check nothing had come loose (there's a pin and a plate in there) and they wouldn't do this until I went to the physiotherapist. I did this over the winter and stopped going at their suggestion when I started to feel better which was just following the easter holiday. Surprise, surprise now it's getting colder the pain is coming back.

Last winter I also started to suffer from terrible pain in my fingers which again pretty much disappeared when the winter was over. I did see the doc once and he said it's probably arthritis come back for blood tests. I didn't bother because it's a bit of a hassle to get to the docs and I know they can't/won't do much about it.

This year I've started to suffer much worse and much earlier in the year so I went to the docs on a Monday when I know they can do blood tests. She said that it's either RA or OA and the blood test would confirm. I don't know much about this but I do know that RA can be treated to some extent to slow down it's progress and OA can't???? I explained to her at the time that I was struggling with looking after my kids, driving to and from work, using the mouse and keyboard at work and carrying on with my home based business (which is craft related) all because my hands are weak and I struggle to get a grip on anything with them. The ankle and knees I can deal with because they don't actually stop me doing anything.

The RA factor test came back negative so no further suggestion from the doc as to what I can do other than to wear a hat, gloves and thick socks and take paracetamol/ibuprofen mix. I did ask if that was dangerous to take on a prolonged basis as I've hear Ibuprofen linked to stomach problems and she seemed to think it would be ok to take them at the max dose indefinately...not happy about that so I tend to only take them when I can no longer cope.

Both docs who've looked at my hands say there is no visible sign of damage (depsite being shown and asked to feel the obvious deformity that I and others who know me can see and feel) and there is no redness or heat. The fingers on both hands are bent towards the middle finger and I have lumps just above and below the joints but because they aren't actually on the joints the docs aren't interested.

I really feel at my wits end. I know that others suffer far worse than I do but I feel frustrated that I have access to only two docs in the practice and both of them have dismissed me without really listening to the problem. I do plan to go back again to ask what now but getting time off work is a problem just because I am so busy and travel a lot and we only get the GPs visiting our village three days a week for half an hour each time.

So that's my story in a nutshell. Thank you for reading and any suggestions you can make as to how I can get through to my GP that I actually am suffering in spite of the lack of visible symptoms.

elnafinn

Hi Jo

Hello again! My, my you are in a difficult position here with the only 2 gps available, washing their hands of you and basically showing you the door.

Just because a blood test comes back negative it does not necessarily mean that you do not have RA also this works the other way. The blood test can come back positive but on seeing a rheumy he clarifyes for certain whether you have RA or not. This latter scenario happened to me and I did not have RA but OA as was always previously diagnosed.

There are splints that one can have made up for the hands either to use only at night or splints to be used in the day or as and when required.

I presume if you asked to be referred to a rheumatologist both your gps would refuse .......it would appear that the gps you see are not too knowledgeable on "arthur". If that is the case they should refer you to someone who does.

You appear to have some fight on your hands here. I don't really know what to suggest other than another practice elsewhere. Or to pay privately for an initial appointment with a rheumy but why should you have to do that because of the incompetence of your gps.

I do hope someone answers with some good ideas for you.

Luv
Elna x

frogmorton

Hi Jo
I am very pleasde to meet you
Sorry you are suffering at the moent and not seeming to get much help from your GPs
They can often be like that though.
Lots of us have had similar experiences.
An idea if you haven't already tried it is to take someone with you to speak up for you or back you up. They can really support you. I usually do that if I can otherwise I forget to say something.
As for your meds. I used to take ibuprofen for yEARS at the max dose but now they give me the two-bob-bits and terrible stomach cramps. They are good though if you can take them as they are also an anti-inflamatory.
You can buy paracetamol and copdeine over the counter too now whcih might help, but if thses meds don't help enouigh you have to go back to the docs. Oh yes and take a list with you so you can go througgh your ppoints quickly, clearly and effectively.

You take care
I hope someone else has a btter idea or two.
Toni x

jmartin

thanks all

ibuprofen doesn't go anywhere near my pain. It feels like my hands and feet have been run over or trod on and I can't explain my ankle pain, which is perhaps why noone seems that bothered about it. It's a totally different sort of pain though and again I've never been able to relieve it with standard pain killers.

I'm trying to rearrange my calendar at this point so I can try again with the doc on Friday. I will take a list with me this time of things that I can't do or find difficult that I could do this time last year.

frogmorton

Yes Jo
do a list, take someone with you, include odd things like exhaustion if you have it, high temperature etc what helps e.g. heat/ice etc.
Good luck
Toni xx

woodbon

Hi, Glad you've found this site - its a very good place to find support and information.

I have OA in quite a few joints and my neck and back. When I first saw my GP she tested for RA, which was negative, so she made me have a second one, which was also neg. I saw Rheummy and I've had an MRI on my neck. I have a nerve & blood vessel pinched in my neck and thats very sore.
When you have OA their are all sorts of medications you can try, its taken me 2 years or so to find something that helps, which is tramadol, but their are lots of things like splints, physio which helped me a lot last year and got me walking pain free for a while. Its a long story, but when I went back to work I damaged it again so its sore but I've just seen a physio today and shes given me exercises for my neck. I'm telling you this as I want you to know that their are treatments around to help OA. Ibroprophene (spelling) is an anti inflammatory drug, you'r right to be a bit concerned, as they sometimes cause tummy problems - I can't take them or any of that family, but they are good for pain relief.

Sounds as if your doctor is old fashioned or thinks hes above everyone. I suppose you'll just have to keep on at him. The help line here has lots of good information leaflets, maybe if you took something like that along with you and asked an opinion, he may realise you need help. The helpkline here may be able to suggest something else useful for you to do. Good luck, Love Sue

jmartin

I've been reading through some of the information booklets - they're really helpful. Thanks for pointing me in that direction.

I think from what I've read that I have RA in my hands, knees and toes and OA in my ankle - is that possible, to have two different types of arthritis at the same time? I say that because my hands, knees and toes hurt more when they are not moving and my ankle really hurts when it's moving, especially aftyer a period of inactivity. I have said time and again to the doc that it feels like there's something stuck in there but he won't listen.

The good news is that I've managed to get agreement to work from home on Friday so I can see the doc then and I'm in the process of writing my list.

elnafinn

Hi Jo

Yes you most certainly can have both oa and ra at the same time. I do hope Friday's appointment is fruitful for you. We really do have to fight to be heard with some of these medics. People are saying that all the time on here. Goodness me, after all it is their job and they are paid to help patients. If they do not have the knowledge they should refer the patient to someone who does.

Luv
Elna x

jmartin

Thanks Lynn and Elna,

It is good to be able to get the time off work.

skezier

Hi Jo,

I Just wanted to say hi and welcome to the site and agree you can get more than one type of arthritis. I don't know where in the UK you are but I belive you can ask for a referral to a consultant and they have to do it, once at least. I think you need to dig in and make them help you. Good luck and I really hope your gp will be 'more reasonable'. Take care Cris

sharmaine

Hi Jo

I would take Elna's advice and get a second opinion. Did the x-rays of your joints indicate OA? Go back to them and ask. I was misdiagnosed and suffered for years with pain that was due to OA. It was only a change of GP surgery that finally diagnosed OA. If there is pain or discomfort on a long term basis then there is something wrong.

I hope you find out soon what is causing it.

Take care
Sharmaine

jmartin

Hi,

I'm in Scotland so I don't think I am entitled to pick and choose a consultant. I tried to do this last year with another problem I had and was getting nowhere with and failed at the first hurdle that said if you are in Scotland go no further.

Haven't had any x-rays - the only one of my ankle was from the time of the break and they have since refused to re x-ray it. I'm hoping for an x-ray of my hands though at the very least. If they can't diagnose, how can they recommend treatment.

Hopefully I'll have more answers on Friday. I'm armed (with information) and dangerous

hileena111

Hi
I can really sympathise with you about your GP's...Mine is a one man band and he's not interested. I tried to change practices and they said are you new to the area? No...have you got a doc...yes...then we cant take you!!!!
I've got a plate in one side of my ankle and pins and screws in the other side and an independant ortho surgeon wants to see me next June {18 month after the accident I'm claiming for} he says that by then there should be the signs of arthur there {as well as hips and spine.} I have got one finger {my ring one} that has quite a large swelling on the bottom of the joint and they gave it a name....but said they couldnt do anything until it started curling in towards my palm. Sorry not much help...just know that you have my sympathy
Hileena

jmartin

hileena, I hope you get some results soon.

I went to the docs again today ready for a fight and was pleasantly surprised. I have come away with some voltarol for the pain and the promise of a referral to Rhuematology.

The doc reckons based on my bloods that it's not RA but OA. I explained how worrying that is to me given my age (32) and she agreed that it's not good. I explained to her the things that I am having trouble with and the pain that wakes me in the night and she was very sympathetic. I wonder if it depends what time of the month I catch her...whether the budget is used up for that month yet or not.

So I have to take the painkillers 3 times a day although I'm still not happy about constantly taking NSAIDs and will try then twice a day initally. The doc reckons I'll need to wait a good few months for a referral so I guess now I just wait.

hileena111

Hi
Glad you got some positive results.
I had an appointment for this afternoon and like you went there ready for a fight LOL Its almost 7 yrs since I was diagnosed and not had much done since.
I asked for a referral to a rheumy and then I mention pain clinic.
He {GP} asked a few questions checked my hip/leg etc. He checked back 7 yrs and said it was diagnosed as OA and rheumys really only dealt with inflamation like RA.....an orthopaedic surgeon was the best person to see.....talk it out with him and it might be time for a hip replacement HELP!!!!!!!!! if not they had better access to physios etc. He gave me codeine to take as well as the paracetamol. As for the pain clinic he said lets see what the orthopaedic bloke says first then we'll refer you to that. He says I should hear by the end of the month....about 3 weeks time....if not get back in touch with him.
Sorry I'm taking over your story :oops:

Hileena

jmartin

Pleased to hear you're getting somewhere.

My doc wants a difinitive answer to whether it's RA or OA. RA runs in my family so I'm struggling to get to grips with why it would be OA and not RA...we'll see though. I really don't know enough about it and I guess all I can do is explain my symptoms and let the experts decide.

The voltarol is working a lot better than ibuprofen, could be due to dose or different formula but my ankle at least feels a lot better now. I know it's just masking the pain but for now I'm happy to have less pain for a while.