Can't get any help. Should I go to A & E? Am I just a big nuisance to everyone?

[pinksugarmouse]

About two weeks ago, I had a really bad flare-up. Years of RA has left me with damage and a certain level of pain all the time, but this was really off the scale. I had to beg my GP receptionist for an appointment for the following day. They have a policy of only giving appointments at 8.30 for the same day. I pointed out that that meant that theoretically a hypochondriac could be lucky and get an appointment every week and people who had chronic conditions might never get to see their GP even though it was supposed to be part of their treatment. I told her that my jaw was seizing up and I could no longer use a teaspoon to eat. In the end she reluctantly made me one for the next day emotionally blackmailing me by ending the call "I'll probably get the sack for this."

I saw the GP last Tuesday but they don't store any real information at my surgery, so he had almost no information on my medical history. I explained what was happening and said "I need a steroid injection immediately because the flare up will not let up without it, risking permeant damage on top of the damage already there." He said he only had experience of giving them into joints. I said "this is far more complex and many GP's are not trained to do this so if you can give me a steroid in my knee you can definitely give me an 'overall one.'

He said "I'm happy to give it but I need your rheumatology clinic to fax me some information, the dose etc" So I got straight onto them or rather my partner did. He was passed back and forth. My nurse was on holiday so finally another agreed to send a fax. My partner called first thing Thursday morning and was lucky enough to get me an appointment that day without having to resort to begging.

I went in but......the fax hadn't been sent. I told the GP I wasn't leaving without the right treatment and would wait in the waiting room to complain to the practice manager about them having absolutely no medical history worth mentioning on their computer system. The practice manager came out less that fifteen minuets later and said they would give me a steroid injection right then. They did. The practice manager then saw me in his office and agreed that they needed far better communication with my specialists and should have my medical history available.

The injection worked to a point. My jaw improved and whilst it still has past problems I can open it to eat. (Although my appetite is non existent which is almost unheard of for me.)

I still have more pain than normal in my left knee and I know it's heading for another steroid (noooooooooo! lol. They are dreadful but they do usually help.) But my left wrist is horrific. It often feels as though a rat is biting it, but this is constant and far more severe and I can't lift up my quilt with it without my splint.

My splints are not really helping. I bought them myself. They are not as firm as NHS ones but they gave me the flexibility I needed. I looked in Boots for some firmer ones but they were absolutely huge (I have child-sized hands). I spent £50 on a resting splint but it is far too big even though it said small. It came with no instructions and seems to require you to put your hand in a position which no-one could achieve even if they were double-jointed.

Sorry for the long post.

So for those of you who haven't dozed off reading this.....I have taken my tramadol which usually works wonders but hasn't touched my wrist today. I can't get hold of anyone from rheumatology, not that I ever can. My GP surgery are no help and I don't know what else to do.

Every day this goes on my wrist is changing shape. I can see my wrist deforming before my eyes. That sounds dramatic but we know how fast RA can damage smaller joints. I don't know whether I should go to A & E. They can't give me anything to stop it but they might be able to give me some better splints or strap it up (probably not a good plan) until I can finally get some advice from rheumatology.

I can't plan when my flare-ups occur. It feels as though I am just a big inconvenience. We are told don't wait when you have a flare-up, act quickly but I am trying and no-one seems bothered.

Should I bother A & E ? Or wait indefinitely for rheumatology? Has anyone gone to A & E for their RA? In the lifetime I have had it I don't think I ever have.

[weathervane]

I think if you are in unbearable you should go to A&E sometimes there are specialist doctors on call

[Matilda7]

How far away is your rheumatology dept? Can you go there and see if someone will see you? There should be an emergency RA clinic....but really your GP should be the one supporting you, and referring you to them. Hope you get some help soon.

[helixhelix]

You're not being a nuisance, you have a badly controlled disease that needs better treatment. And you should have a better service from your rheumy team and GP. So start making a huge fuss directed at them.

Personally I would only go to A&E if there was something they could do in terms of emergency medicine. You have taken tramadol, so are they like to be able to give you anything more effective? And your GP should be able to provide splints, so would waiting for hours to get something similar really help? A&E departments are swamped with people so I'm very reluctant to add to their burden if I can hang on overnight and harass my GP the next day.

[pinksugarmouse in reply to helixhelix]

I am okay to hang on overnight but I have been 'hanging on' for night after night. I can't just live life in a blur on heavy pain killers indefinitely. I did see the GP today as an emergency and he has made an emergency referral to the OT. I have left a message on the Rheumatology team answer machine. I am supposed to go back to my voluntary work next week but on heavy painkillers how am I going to give complex benefits, debt and housing advice? It's like being stoned!

My partner is great. He is doing everything pretty much because I can't hold anything in my left hand. My thirteen year old daughter is fine with it. She's not worried at all because the internet is working, the TV is working and the fridge is well stocked. She has made me a cup of tea today! I might push my luck and ask for another one! Lol.

The one thing that really helps is sex. Lol. No I am serious, gentle sex seems to be a natural pain reliever and no matter how much pain I am in it never seems to dampen my pretty high sex drive. Sorry if TMI but anyone who is worried about sex when they are in pain, trust me its worth trying. Just make sure your OH knows which bits not to lean on.

[helixhelix in reply to pinksugarmouse]

I'm not meaning to dismiss the pain you're in - it's more asking the question about what A&E could do for you to make it worth sitting for 8 hours in a corridor waiting? Yes there are specialist doctors on call - but usually cardiac surgeons, or neurology specialist not rheumatologists!

[pinksugarmouse]

Gosh an emergency RA clinic. Is my area just particularly rubbish because I don't think I get access to even half the help some people get from their GP's and hospitals? I have had to pay for my rollator, pay for my splints. I know I could get some of them from the NHS but it take forever to get any help. Referrals take ages and seem to have to go through half a dozen channels.

The GP's I have seen don't seem to have any knowledge of RA other than it causes pain and joints to seize up. I can't ask for advice. They ask me. I was referred to a Physiotherapist about a year ago on my request (nagging). When I got there she asked me "so what is your condition?" (errm shouldn't she have known before I arrived?) She then told me "I don't really know anything about rheumatoid arthritis I will have to look it up" I was only allowed six appointments. This didn't fill me with confidence. The following week I had to cancel because I woke up in such pain I couldn't down the stairs let alone on the bus but because it was less than 24 hours notice they cancelled my treatment completely. I argued "but you know my condition varies and I don't get 24hrs notice" But apparently because I had cancelled another unrelated appointment within 24hrs in the last 12 months for the same reason, terrible flare-up, can't move they refused to budge. But I can't think I missed out on much being treated by someone who had no knowledge of my condition. How does a Physio know nothing about RA, it's the bl***y leading cause of disability in the UK!!!

I have seen the GP today, he is asking for an emergency OT appointment for me. That means I should get one before Halloween.

It just makes me feel well pretty worthless.

[pinksugarmouse in reply to pinksugarmouse]

Actually you know what. I am not worthless my partner loves me, my daughter loves me, and my cat loves me (okay no she doesn't I am just her servant) but she loves my lap and they (and the guinea pigs) are my family. I matter to them, so I can't possibly be worthless

And if I play my cards right I should get some more natural pain relief later nudge, nudge, wink, wink.

[earthwitch]

It sounds like you should really be pushing for a rheumatology review if your disease is that out of control. I'm also quite surprised that you had to buy your own splints, as an OT referral would have had a resting splint made especially to fit you. Steroids may be miracle drugs to give relief, but remember they are also some of the most dangerous drugs available to us as they will cause long term (cumulative) effects that could end up way worse than the condition you are trying to treat, and you just never know when they are going to do their damage - could be in less than a couple of months, could be years.

Have a chat with your GP about getting them to write to the rheumatologist explaining how bad you have been recently, that your RA is so out of control you are needing tramadol for pain relief, as well as steroids, and asking to have a RA medication review as soon as possible.

[pinksugarmouse in reply to earthwitch]

I am fully aware of the risks of steroids having had the disease my whole life but I am also fully aware of the damage the disease can do as well because I can see and feel it. I use them sparingly BUT I also know that sometimes when the disease suddenly runs riot then a well timed steroid injection can give me back my life.

My disease works a bit differently because I have juvenile arthritis. It is viewed as the same as adult rheumatoid arthritis because the pain and symptoms are the same but it behaves quite differently.

I appreciate the support and I know it's well intended but I KNOW what I need because it's what I need the last god knows how many times it's happened my whole life. I have recently had a review of my drugs and am confident that my long-term medication is good. But long term medication might reduce my flare ups. It's unlikely that anything will stop them.

My doctors ask me what works for my disease and believe me when I tell them what I need, BUT they are not great at communicating the right information with each other, so referrals take forever and I tend to find myself having to chase one person to give information to the other. I am like a messenger.

Last week I could hardly move. I was able to get to and from the toilet and with lots of help have a shower, put on fresh PJ's and get back into bed. I was in agony and even my tramadol was ineffective for the pain it just made it possible for me to shower. My partner would have had to go out a buy me a baby spoon so I could eat. That steroid meant that I can get dressed, walk, eat, look after my daughter. My jaw is already fused from past damage, if I had not had the injection it might have closed up completely. I wanted to slim for my wedding but that is a bit extreme.

I have had a lifetime of pain and restriction. This disease has impacted on absolutely every aspect of my life. It is a part of who I am. No side effect could scare me off taking these injections when I desperately need them and you suggest the effects could be worse. I don't scare easily.

Steroids are an essential part of my treatment. I don't abuse them nor do I fear them. Please respect the choices I make for my body.

[3LittleBirds2 in reply to pinksugarmouse]

You really do not need to have to explain or justify the way you're feeling. X

[Sheila_G]

I am so sorry you are in such a lot of pain just now. I think there are several issues here that all need to be addressed. Firstly, you are not an inconvenience. It is the simple fact that unfortunately this disease affects so many people that the rheumatology departments are under siege with patients in exactly the same boat as you. I know this doesn't help with the pain but it does let you know that they are not ignoring you. I am sure they are trying their best but I know how frustrating it is when you can't get what you need to take your pain away. Another issue is that when we have a disease like RA, with its many separate problems, we tend to blame everything on it (RA) but it might not always be and this is a danger. I have often said that other problems could be overlooked because we always say it is "just another flare up." For this reason I would say you should go to A & E. I really do hope you get some comfort soon x

[pinksugarmouse in reply to Sheila_G]

I think you make a really good point about the pain being dismissed as "just another flare up" I went to see a podiatrist a few months ago after having to chased and nag my Rheumatologist because as I pointed out I hadn't seen one since middle school (for those on the two tier that's the last two years of primary and the first two years of secondary). He said "actually your feet aren't too bad, the problem with your legs is your calf muscles are so short and tight and you haven't had anyone helping you to stretch them out for years and that's really common with RA" so although the pain was related to the RA it was muscles not joints in this case and the GP or Rheumatologist wouldn't have ever thought to tell me this. Unfortunately there isn't much I can do for my muscles because the exercises sent horrendous shooting pain through my knees.

I actually don't go to the doctor for other things that most people would because I feel I am already using my "share of their time" with my RA. So I would have to be at deaths door to get medical help for anything else.

[BoneyC]

Never been to A&E for RA problems, except when THR became re-infected but had first been seen by a GP on a Saturday morning and he made the referral.

[DelicateInput]

With regard to whether you should go to A&E for a steroid injection, the answer is resoundingly yes.

A friend of mine went when she had a painful knee caused mainly by being overweight, and they gave her a steroid injection without hesitation.

Moreover, it might help your surgery to get their act together if people start going to A&E. You are an emergency, after all.

In my area, there are walk in NHS arthritis clinics, mainly for osteoarthritis, but anyone can go and they have imaging facilities. Look on your NHS borough website to get details. My GP surgery also has a visiting orthopaedic surgeon coming in almost every week (not to be unkind, but to see all the fatsos who can't walk properly) to assess for routine hip and knee replacements. They would be able to give you a steroid injection.

[pinksugarmouse]

I had my steroid injection from the GP. It worked, thank heavens! I have been feeling generally unwell and tired for a few weeks now but I went out last night to celebrate my 18mth anniversary and felt great. I have also lost another 2lb so that's 6 and a half in just three weeks. I'm not very overweight, just a bit but I have put a little bit on since falling in love. Hubbie to be is naturally very thin and never stops eating (no health issues it's just normal for him) but mine crept up a little bit. Now it's going back down again. I heard somewhere that for every 1lb you are overweight it feels like an extra 4lb for your knees! Ouch! Especially not good for knees with RA.

I'm going down the aisle in May so I want to look and feel the healthiest I can be. I feel much better. Thank you everyone for your support.

[Jamo333]

Having similar problems. I've just been to my GP but came away with nothing, just a physio referral. He wouldn't even give me a steroid injection. He said I need to make an appointment. Just a lazy fanny sitting at a desk. I've done physical work all my life, unlike this lazy fanny.