Hi Jami, and welcome to the forum, though I`m sorry you are feeling so rotten.


I`m not sure what meds you are taking since your diagnosis, but I do know that (a) they sometimes take a long time to work, and (b) sometimes they don`t work, which means you have to embark on different drugs, until you arrive at the one which brings you some benefit. What works for one person doesn`t always work for another.

Has any of your medical team suggested a steroid injection? These are a great help to "tide you over" until your meds kick in, and should being some measure of relief. I was given one on my first appointment, on diagnosis, then another one later, while waiting for drugs to work.

When are you due to have your next consultant appointment? I`m not sure how your system works, but most of us have access to a rheumy nurse, who should be able to help you, and can act as a "bridge" between yourself and your consultant.

Are you taking any anti-inflammatories? (NSAIDs) These don`t suit everyone, but can help with inflammation and joint pain.

I`m sorry I can`t help with the numbness in your feet, but you really do need to have the RA under control to prevent any more joint damage. If you are having trouble getting rheumy appointment, you could speak to someone at NRAS, as they always have valuable advice.

I think you need to see your rheumy sooner rather than later.

Take care,

Kathleen x

Julie

I am so sorry to hear how you are suffering. I am sorry but you are most probably going to have to make a nuisance of yourself with your Rheumy team and tell them what you have told us. Get on that phone on Monday and tell them you can no longer cope. Speak to your GP and say you cannot cope and can they also contact your Rheumy team. The early months of treatment are the most important to hit it hard and fast.

You do not say where you live, but perhaps if you did, someone could suggest a good Rheumy Consultant near you or within driving distance.

I was diagnosed in January 2010 and those early months were terrible. You are in pain, you have to come to terms with what you have been diagnosed with and your life is going to have to change to be able to cope. I have seen a Consultant a couple of times privately (cost £120 per time) (referred by my GP). It is a lot of money which I could not really afford, but I got an hour each time with the Consultant, he took the time to listen how I felt, examined me thoroughly and organised some further tests. He came up with suggestions of medications and then wrote to the NHS Rheumy team advising them how I should be treated. It certainly got me on the road quicker to a course of good treatment.

HOWEVER, you should also be able to get this standard of treatment on the NHS but you will have to push for it if your Rheumy team are not playing ball.

Give the NRAS helpline a ring as well as they may be able to help in suggestions on how you can get better and quicker care. You definitely should not be waiting until August to get some help.

I hope you get something sorted soon.

Take care

Jackie
xx

Jami, I also think you should phone the rheumatology nurse and explain what you are going through. Maybe she/he could reassure you about what the next steps might be and how much longer they are going to give your current drugs to work. Just having some kind of time scale might give you something to aim for and help you to feel less abandoned in the dark. I know there are lots of drug options out there so there is always a plan B and C. As far as the numb feet go, I have this too in the hands and feet. I'm told it's due to inflammation causing swelling and pressure on the nerves, and that it should settle down when the RA is bought under control. I hope you have adequate pain relief to get you through. I found that co-codamol wasn't enough for me but am much better now on Tramadol. It's not surprising that you feel in turmoil. I think that's a normal reaction to what you are going through and most of us felt the same as you in the early days. Love Naomi x

Hello Jami

Wrote an answer yesterday then laptop had a dizzy spell and it got lost, so I will try again.

I also pop on the healthunlocked nras forum and a lady on there stated that her consultant told her that they are so overloaded at the moment that if a patient doesn't contact them they have to assume that they are doing OK. She also said that she thinks that RA is a self service disease, so if you don't take your tray to the counter, you don't get fed................In other words, them that don't ask, don't get. Don't be frightened of making a nuisance of yourself, this is you, you are suffering not them, I'm sure that they would if they were you. I've used the word nuisance because it's what you said, but I don't really think that you would be a nuisance. You are trying to get some help from the only people who can help you.

I recently read an article in a newspaper. You know how we can now gain access to our medical notes, so doctors have to be careful what they say incase we ask to see the letters. It read that when a GP refers a patient to the hospital if the letter reads....Mrs xxxxx is a very pleasant lady......re read...she will not make a fuss, you can leave hanging around at appointments and she won't complain. If it reads Mrs xxxx is a very confident woman.......re read..she knows her rights, voices her opinion, won't be messed around....If it is true, I don't know, but if it is true well be Mrs Confident.

About your feet. I have got friendly with the assistant at my pharmacy, her mums got RA and I always ask about her mum when I see her. She's been having problems with her feet. Some days she could hardly walk at all. Been referred to podiatrist, dermatologist, all drawn a blank. The last time I saw her she told me that they know think that she's got nodules under her skin in her foot and that's what's causing the problems.

Do ring tomorrow, write down what you want to say first and be confident!

Take Care
Paula x

Thanks everyone. I phoned the clinic team this morning and left a message. I must have sounded desperate as normally it's a couple of days until they phone back but they phoned me today and I'm going next wednesday to the hospital. Hope to get more help. Thanks again Julie xx

Hi Julie

Welcome to the forum Glad you have found NRAS and the forum family!

When I was first diagnosed my feet and hands were the worst. This is often the case as Rheumatoid tends to affect the smaller joints. Your foot pain sounds very much like the metatarsal heads have dropped and become inflamed due to constant pressure. I had this and it feels very much like you are walking on a pebbly beach. It can make life feel very miserable but there are ways to improve this even as a temporary measure.

Firstly, your GP is responsible for providing adequate pain relief. Always ensure this is kept topped up to ensure maximum benefit. Don't wait for the pain to start, it's too late then! With chronic pain you have to pre-empt it and at times of high inflammation take the maximum pain relief available. Ensure that you have pain relief that will help through the day and something stronger to cope with night pain and help you sleep. A good night's rest is inmportant to help avoid the fatigue of Rheumatoid. Bad feet require drastic measures! Good supportive footwear; no heels, good support for the metatarsals and the foot generally and breathable. Rest your feet, raised whenever possible, but keep them mobile with gentle rotation exercises. Next stop, a request through rheumatology or your GP to see a podiatrist.

Hope all goes well at your appointment and you get a good result . You don't need to be nuisance, they just get a name for themselves and annoy everyone else, but be aware of your own condition and be prepared for your consultation. Keep us posted,

Lyn x