I've been having issues with a few joints (hands, wrists, ankles and tailbone oddly) for years.
Been to my GP constantly going back to beginning of 2017 and just had everything ignored. Was told for my dodgy tailbone not to sit on it (yes a doctor advised me not to sit on my own ass), my wrist I told was sprained despite not having an accident to cause it, it had got worse over the last 6 months and I was told this was 'because sprains take 8-12 weeks to heal'. When I went back as I couldn't even make a fist anymore I was told I was just too weak for my job. It was at this point that I gave up entirely with the surgery.
I changed to a new GP and went in when some of the pain was particularly bad. Sent for wrist, hand and ankle MRI's and from this been referred to a rheumatologist.
MRI found damage to the bones in my joints, swollen lining, extra fluid, bone and tendon thickening etc.
I'm now terrified.
The blood tests I was sent for in preparation for this referral were all for RA.
My issue at the moment is that the pain has very rapidly increased since my MRI results (30.01.2019) and my referral (05.02.2019). The pain has spread through other joints and it is becoming increasingly difficult to manage certain tasks (I have a toddler and a baby) and by mid afternoon i'm ready to cry.
NOTHING WORKS!
I can't find any pain killer or cream or heat bag or ice pack that has even the tiniest iota of effect of this pain. It is worse every day and I'm struggling to get up in the mornings.
I don't know what to do. I'm stuck waiting on a referral that I'm guessing I should have had around 18 months ago and whats most upsetting to me at the minute is that i'm a little bit shittier as a mum every day as my range of movement decreases, my pain goes up, my patience is non exisitent and I can barely string a sentence together as I haven't managed longer than 3 hours sleep in a row for about 5 months.
Any help or advice in how to calm this down or reduce the pain would be much appreciated.
Even just move it - I'd be happy if my hand just stopped hurting for half hour.
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Ginge_31
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I'm so glad you found us Ginge, even more glad you got rid of you waster of a GP. Yes, you should have had this appointment long ago. As we are ot doctos, or medically trained, but we do understand pain and suffering. The only thing I can suggest (until your appointment) is to try an Ibuprofen gel on your hand. I'm sure others will come along with more suggestions and support. Don't be afraid of your appointment, keep a pain diary and if possible take photographs on your phone to show your consultant. You might be given a course of steroids to give you some relief until you are started on a treatmet. Also, visit nras.org.uk for information about RA.
I knew they were bad and that it was going too far when he told me I was weak. I went home and I cried about that (thus proving the a holes point).
I've tried the gels (started cheap and worked up), they just don't seem to penetrate to where the pain is. best so far has been a wheat bag - i think its the weight with the heat, but not much. That just allows my to keep still without agony.
I'll be calling my docs in the morning to see if I can go in and speak to him. I was a bit floored with the referral tbh so didn't even ask about pain management at the time.
I have a very high pain threshold and its caused issues before. I have to explain to my husband that if i'm crying i'm at a 10 and need a hospital. Because of it, I've had stuff overlooked so am keeping diaries of all pain and when/how intense it occurs.
The thing is, I work full time - there f all I can do but keep going every day.
Some drs don't have a clue do they darling. Some shouldn't practice at all darling. Well you you have come to us as there will always be someone here to answer or support you. There is nothing to worry about seeing a consultant darling they are the experts in their field. Do be patient with the drugs as they take up to three months for you to feel the effect. Write a list of all the questions you want to ask and take it with you darling Take someone with you as well as you will not digest half what they tell you as well.xxxx
When she effed up basic maths I knew it was time to go elsewhere. I'm not so much scared of a diagnosis or drugs or pain or any of that, i'm scared of the progression.
Sort of scared and mainly just fuming with the first gp surgery.
I'll be sure to take somebody with me, I usually wouldn't but I think I may need to with this. Even if its just to calm my anger when I do find the extent of this :S
Hi Ginge_31, so sorry to hear how much you're struggling with the pain & sleepless nights. I totally understand where you're coming from & the frustration because you can't get a break. I've had RA for 33 years now, was diagnosed aged 32 years with a 10 year old daughter so it wasn't so drastic & she could at least do things for herself. But I had a manic depressive husband & he didn't like it when I was unable to carry on he had to help. Unfortunately stress is you're enemy & will cause flare ups. You ideally should rest tge joints once tge pain is unbearable-I used to go to bed with a hot water bottle where it also helped me to relax & de-stress. Having said that, it's not easy for you to keep calm & carry on when you've got a toddler & baby! My heart goes out to you. Isn't there someone who could help you with the children & give you an hour or so to rest- might help. I'm sorry I haven't got anything more practical to say other than get to youre RA consultant a.s.a.p & get some medication before the joint damage starts to become permanent. I was initially against treatment as I had a horrible consultant who wanted to put me straight onto gold injections & treated me with contempt, a real male chauvenist! I walked out & went Homeopathic for 5years, but unfortunately that caused ireperable damage to my hands. I was then lucky enough to find a fantastic Consultant at my local hospital who put me on on Prednisoone steroids & Methotrexate. It worked well & apart from flare ups when I'd overdone it cos the pain had eased. I was able to work full time & even did a snowboarding red letter day with work at an indoor snowdome. My consultant dined out on that story! If you get the medication right it will bring down the inflammation & you can have a life. I use Volterol gel which one doctor poo poo'd as hopeless, but it work's for me. I also use heat from hot water bottle or heat pad which I find soothe or ice pack ( frozen peas in tea towel if not got ice packs) which hospital physio always advises to bring inflammation down quickly. I came off steroids after 26 years a few years ago & I'm now on Abatacept Biologic injections & 7.5mg Methotrexate tablets once a week, which works well & I've even been able to reduce my injections from weekly to fortnightly. But you can only get biologics once you've tried all the other tablets, which I had. I do hope you get some help & support from you're doctor & you get to see an RA Consultant quickly-that's imperative so push if you're appointment is delayed..dont be scared-they're there to help & in my experience all the consultants & especially the RA nurses are dedicated & lovely.. I'm here for you if you've got any questions. Good luck!
Did your GP not give you any pain relief? If not I thought he/she would have prescribed naproxen or something. If you are still in a lot of pain when you see your rheumatologist it will be worth asking for a steroid injection, which work wonders for most people, to help tide you over until whatever medication they prescribe for your RA starts working, which as Sylvi says can take some time.
I have painful feet but have yet had a doctor tell me not to stand on them!
Getting the MRI results I didn't see my usual GP, I saw another lady i'd never met before (new surgery, i think I've met about half now) - I didn't even think to ask tbh.
My husband had been going on for weeks about how so much pain is just psychosomatic so i'd ended up walking in I think expecting to just be told I was mental. When she started listing damage i was a bit shell shocked, she asked if I had any questions and I just shook my head and left.
Yeah when he said don't sit on it i did ask 'what, my ass?' and he just sort of stared at me, I think he just realised what he'd said. As I left I told him i'd try to levitate from now on instead.
When I got back from the docs I told him he needs to do a little bit of research before coming back to me about it.
He has since apologised and realised its a little bit more serious than he had assumed. I don't think the man actually believes I am capable of feeling pain and he watched me birth two kids and roll around with appendicitis for 3 days.
I don't whinge and moan, I don't even say anything. If i'm in pain i'm just quiet and possibly a bit snappy if your being a cretin. Don't speak to me unless you want the honest and painful truth kind of snappy.
If something ridiculous or stupid is going to happen, it will happen to me
I have learnt to laugh at everything, and I mean everything cos the alternatives don't bear thinking about.
Oh well, that's your own fault for not having a good old moan like us men do to our wives.
It helps to have a sense of humour with this stupid disease.
This is a great forum full of really nice helpful folk. There's a lot of knowledge here too. So well worth hanging around at least until you get on top of things, which hopefully won't be too long.
HI ginge I really feel for you I was refered by my gp to see a rheumatologist but I actually paid to see one private as my appointment that came through for hospital was for later this year ,so I got to see one within 3 x weeks and it cost me £160 , it was a lot of money but well worth it for me as I got put on treatment and got a steroid injection which makes you feel great, hopefully your appointment will be soon, the people on this forum are great as they all know what you are going through, I used to take naproxen and paracetamol and have a couple of them microwave heat bags which I find help me also I bought deep heat muscle rub in a roll on which doesn't have that awful smell and you can roll were it is needed but they cost £5 , I usually buy a few from morrissons when they are on offer at £3, bless ya....
If I had the money to right now, I would most definitely go private. I really am against it as I keep saying, why the hell should I pay for a service that I have already bloody paid for, but I think that's exactly what the government are pushing us to do.
Enough of us go private and there's the statistics for why it should all be private - conveniently forgetting its your 10 years of slowly de-funding and dismantling the service which has forced people into the position in the first place.
I'm hoping the gp can help even a little bit tomorrow.
I'll give that deep heat roll on a go, I like the smell of the cream (i'm a weirdo) but i'm the idiot that ends up with it in their eyes or something by accident.
If I was in your position, I would phone NHS 24 and ask a GP to come and see you.
You are in severe pain and work and have two young kids and don't sleep and had a cartoon GP surgery! That's just way too much for anyone to cope with. As well as that you have an unempathetic husband.
It's Friday tomorrow, if you don't get a GP appointment your stuck all weekend. I wouldn't stand for that.
In my life if I'm not currently dealing with some ridiculous situation, I know there's one on the way I need to brace for
The husbands getting slightly better. To be fair to him, at 31 years old there's only 2 people on the planet that can tell when i'm in pain without me saying.
I know I can call 111 for advice and that they can send me out of hours. But the experience I've had of that in the past has been awful. I had a male doctor ask me if the blood was from front or back about a week after a natural birth who was quite angry that I couldn't tell. I did try to explain to him that the whole area is a swollen car crash of pain and that he could have a look for himself if he wanted.
I really don't do well when I'm in pain and told/asked stupid things.
I think they don't like to get involved if there's anything active or being investigated under a gp as well. I think I've just got to try and get the appointment tomorrow and pray they can do something. If not I can go and chain myself to something important looking at the hospital till someone takes pity on me.
Dont know how it is in the UK but seems to me you have quite an active inflammation that should be stopped as soon as possible before thinking of other options. My experience is that this is done best by a course of cortisone. Have you talked with your GP about this option in your accute situation?
I've hardly had a conversation with him at all lol.
I'm gonna call at 8 am tomorrow morning and squeeze in at some point. Hopefully the boss is understanding and is fine with me working from home.
It feels quite active I can tell you that. went from 1 hand and ankle actually hurting to both hands, both feet, ass bone, chest, neck, shoulder and elbow in two weeks.
Prednisone was the oly thing that got my inflammation somewhat controlled after experiencing similar problems as Ginge with extreme pain and little sleep for 3 months...dippy doctor as well and hospital send me home without consulting a rheumy with knees the size of soccer balls. Insist on action Ginge now.
I had exacly the same experience. Had a flare. With only 15mg dose titered after a month took away nearly all inflammation.Flares are not good this is when progression the most active, so should be stopped quickly, if possible.
Hi Ginge. What a perishing farce you've had to endure so far. In your position a good first step would be to get some painkillers from your GP and, if you can't get an appointment, you could try ringing 111 who can arrange emergency GP appointments for you. It's what I did in the very early days while I was waiting for the first rheumatology appointment. I was seen the same day by a consultant GP with a special interest in rheumatoid who prescribed co-codamol and tramadol for pain plus something to aid sleep. Lack of sleep plus being in pain would make a saint snippy. Things will get better. Promise
What a horrible tale....so sorry. Some doctors are just crap.
Have you tried splints for your hand? I used to find that helped as completely immobilised the wrist. I could still do things, but it helped keep the pain at bearable level.
Hope you can get to see a doctor to orrow and maybe get something like a course of steroids to tide you over.
As you’ve had the necessary xrays and bloods done it might be worth asking your GP for a steroid injection to bridge you through this period - that’s what my practice did but it was a GP who also specialised and worked as a rheumatologist in the local hospital for part of the week (it was his clinic I joined but alas six months later he retired and my replacement rheumatologist is good but struggles to keep appointments she’s made so I’ve not seen her since 2016!).
Sorry to hear about your story but sadly many GPs really dont have a clue. I wish you well and hope you get an appointment and some pain relief tomorrow.
I’d echo what everyone says. I’d ask for a course of prednisone which is what I did when I first visited the GP. They worked within hours and hopefully will for you too until you get a rheumy appointment.
Lots of very good advice here. I can’t really add to it apart from maybe ringing the secretary of the rheumatologist you’re about to see and telling her how very desperate you are. She might find you a cancellation. I’ve done this successfully in the past. You might have to dig a bit to find the number. If you have the consultant’s name you can generally find their secretary’s number.
Secondly, if you do have any visible evidence of inflammation, take pics of it if you’re about to start a course of Naproxen or steroids so the Dr can see you at your worst.
Good luck, I really hope you get an earlier appointment.
Dr went through all my bloods and what they had suspected and why they had been eliminated. Advised this is most likely RA and that I need to be seen asap . We looked at other hospitals and i have appointment booked now for 8th march. List I was on was another 4-6 weeks.
Been given pregabalin (50mg 2 x Daily) - pain is still present, but now i'm also confused and drowsy at work. Fun times
Bloods were negative for RA factor, he said quite a lot of people are. He also said that the other two tests for inflammation (I forget what they were CC something and E something) were also negative but you can see the inflammation on the scans. he said the same about this that a few people show this as negative too.
So I guess I now just hope this takes some of the pain away and wait my two weeks.
Thank you for all your advice, I've been looking through all the info provided and getting a bit of a crash course.
Apologies for the disjointed rambling, I am feeling quite floaty atm.
You went to your Doctor, with a sore Behind....and he told you not to SIT on it! Beyond getting RID of that, excuse my Phrase here, F..KING Doctor I'm at a 'loss' what to suggest.
As A Mum you could go to A&E, or a 'Walk In Centre', put down your Child(ren) and just start Crying/ Screaming for Help. A little 'Undignified' but it Might just Work.
What concerns me is that this has 'Gone On' so long and now you can't get ANY relief, in this 'Day and Age' that is unbelievable! Have you, from the purely Practical point of view,
got anyone who can Help you with the Children? How old are they, is there an 'Older' sibling? (Don't tell me...all four are under six, grandma lives in Dundee....) I almost don't like to mention this, as I don't know your circumstances but.....Is there a Dad on the scene? A Caring Father, admittedly a Rarity these days, can be a Great Help to such a, no doubt lovely, mother as yourself. Maybe there is a Neighbour, perhaps another 'Mum' who can help? (maybe 'Yellow Cap' from Number 53, 'Big T-Ts' from 22, "what's her name"- drives an Mini- from near the Park..... Maybe NOT 'Bev B.'- I know she was acquitted…….)
Seriously though you shouldn't be in such Pain Ginge! Is there not another GP's that you can join, if only, temporarily? I'm at a loss, as to what to suggest Babe. I WILL Pray, for you, indeed I already have.
I don't know if braves quite the word, more stubborn and stupid lol
Kids are 2 yrs 8 months and lil one is 8 months (my eldest basically got a sister for her 2nd birthday - shes still recovering).
I've got rid of the idiot doctors and moved to a surgery much much better. My first appointment i was sent for 3 x mri's and an ultrasound. I had an infection in my uterus after my first baby and I had to do exactly that - go to A&E and cry.
My cousins a nurse and said that the person who would first see me wouldn't be medically trained and would be looking out for keywords. It could work - but I shouldn't have to scream and cry for someone to believe i'm in the pain I say I am.
I'm worried about the same thing, its gone on so long being ignored - how much damage is there already - how much of it can I actually heal from?
Fathers around, I didn't read the fine print and married the moron. He intermittently helpful He's going deaf so I have to wake him if the bubs wakes up in the night, which I don't cos I'm already awake now so whats the point.
There's a few neighbours I know I could drop these kids to if needed in an emergency, but it would have to be that as they have their own issues to overcome.
I used to be Big T T's from 22 until I lost the weight
I'm hopeful Pregabalin does something (other than make me floaty and high) - or that I drop into some sort of low grade coma and wake up 10-15 minutes before my appointment.
It sounds like you are having a torrid time most people on here have probably been there so we all know what you’re going through. Whilst you are waiting for your referral I would definitely keep a diary if you can find time and take photos too. Next step go see your GP again for some pain relief and if that’s not possible a walk in centre or if you’re really desperate and it sounds like you’re not far off go to A&E. It’s disgusting that you’ve been ignored by a previous doctor but I really hope those times are behind you. There is nothing worse than being in so much pain you can’t bare it. I’m like you have a really high tolerance for pain but even I’ve been known to break down at the GP’s because I couldn’t take it anymore. I’m sure there’s something they can do you only have to ask and be stubborn if they say no you’ve suffered long enough by the sounds of it.
I have trouble even remembering to take medication, I think i'd struggle with a diary.
I've been noting all the pain i.e where, what i was doing, how intense, how the pain moves etc for reference so I don't forget anything when I get to the appointment.
If I thought I had a chance in hell of getting some sort of relief (or even seen) at a & e I would have already been lol.
I have started pics though as somebody advised as that's a lot easier for me to do.
Just of the worse joint (right hand) - done a flat (ish) then a fist from the front and above. Going to do one daily till the app and hopefully put together to show exactly whats happening. I can practically see my index finger twisting, I can feel it urgh!
I was a lurker here for a little while before posting, I only did so as I could see everyone here in similar situations. Sounds horrible that knowing other people have the same agony makes it a bit better? misery enjoys company and all that!
Hi Ginge - I have no words of advice but just wanted to say that you sound just like me!
Undiagnosed atm but pains in the same joints (including tailbone... ) for a few years, and to the same extent from what you say in later posts.., not taken seriously enough by doctors, freezing and not asking the right questions when given info, high pain threshold with the ability to cope until at screaming point, parent to young child - although in my case I’m a single parent so don’t have to put up with dodgy husband comments... 🙄
I’ve just seen a good GP who straight away said probably RA and has referred me for tests and xrays.
However, he did say that if I had a ‘flare-up’ while I was waiting for appointments etc, like you’re describing, that he would straight away refer me as an acute case to rheumatologist. And said seeing a consultant during a flare up would be better from the docs point of view.....
The only slightly confusing thing he said was to use ibuprofen gels or creams to help manage pain - which was great until I realised most of the pain atm is in my hands and your supposed to ‘wash your hands after applying cream’.... 🤔🤔😆 I’m going in to ask the pharmacists advice today about that......
Sounds like your in a full blown flare up hun, go to your gp and ask if she can hurry the consultation on if not she may give you a steroid injection to get it under control, until you see the consultant, I was in a massive flare up a couple of years ago couldn't even walk my gp came out and gave me a steroid injection it was sheer bliss. Hope you get sorted soon xxx
WOW that was like reading something i wrote i have the same problem and they tell me it's my job sitting down for 15 hours a day working for the last 30 years. every joint i have hurts clicks pops cracks but they blame my job.
Hiya Ginge_31, welcome, though I'm so sorry it's in such circumstances. Rather than going over reiterating the good advice you've already received I'll just add my two penn'orth. It's helpful you now have a GP who's seen the wood for the trees & tested correctly (anti-CCP & ESR, chronic or long term inflammation indicator, whereas CRP is an indication of acute or present inflammation) were the two tests you were thinking of?).
Given this I am a little surprised you've been prescribed pregabalin. Two things, it's usually more helpful for neuropathic pain (this is what I'm prescribed it for). Now it's not my place to question your GP but I would have thought something to bring down inflammation & in turn pain would be more apt. The second, given you're are mum to two little ones, holding down a full time job & surviving on little sleep plus the side effects you are experiencing from pred would send any normal person half round the bend. Would it be an option to ask for it to changed for either an NSAID & pain relief or a short course of oral steroids (corticosteroids not body builder type!) to tide you over until 8th March. There's just time to whack it & be able to stop any of those mentioned before you're seen by a Rheumatologist & need to be back to pain & inflammation in order to be diagnosed accurately & appropriate treatment decided.
Just a few thoughts. If we can help further just ask, as you know we know the disease inside out from the patient's perspective! 😉
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