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Date: 15.12.2009
From: KayJay

Subject: Hi A Newbie ....

Hi Guys. I'm a Newbie to the forum so here goes.
Have suffered with Arthritis for about 15 years [ now 55 ]. It started with my back and the Chiro said it was Osteoarthritis in my spine.

Fast forward to new years eve 2000!! and my back was giving me pain then my left knee swelled up like a balloon, I ended up hobbling about with a stick. Then I was okay for a few years. Until about 2 years ago in my left ankle I felt a bone seemed to be sticking out more than my right one. It is a bone spur which now disables me so much that I have to wear an ankle brace and walk with a stick. My left upper inner thigh is also wasted.

The Rhume says that my ESR is raised but he does not think it's inflammatory related. BUT the Osteo thinks it IS inflammatory. So I'm a bit mixed up and have been for the last year ! Recent problems have been stiff hands and my middle finger on my right hand which swells up. I had a scan and the scan guy said it was synovitis. Both hands can swell up on occasions.

Have to see the Rhumie again in Jan but I wont let him examine my left hip this time! I have very limited forward movement in it and last time I saw him he insisted that I could lift it higher, so he just yanked it up in the air - OUCH !! Consequently I got a very bad bout of Sciatica which laid me out for about a week.

Anyone have any advice please ??
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Date: 16.12.2009
From: Angela

Subject: Re: Hi A Newbie ....

Hiya Kayjay, I am 53 and have had RA for 2 years and always have a high ESR.
I just wonder how on earth your rhummy can say at this stage that he doesn't think that inflammation is the cause of your high ESR.
Also what kind of rhummy yanks your joints and cause you more discomfort?
Maybe he was just having an off day,but if not I think you need to take more control of the situation, because you really need him on your side, and if you start dreading telling him whats wrong with you,you will feel so unsupported, and that the last thing you need just now.
I was very accepting at first of what my rhummy said,and understood very little, but after being on this forum for a while, I was encouraged to "be firm", I did and I have never looked back.
Also listen to your body yourself, what do you think is going on?
I make it my business now to know everything that my rhummy thinks is going on with my body,as well as tell him what I think is going on.
I keep a book of all my blood results. I ask what each result means if I am not sure. Infact I take in a list of questions with me most times,so I am always in the know.
If I was you, I would tell him in a diplomatic way in Jan, how he hurt you after the last appointment to, he needs to know.
Hope this helps
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Date: 16.12.2009
From: jill

Subject: Re: Hi A Newbie ....

Big Welcome kayJay, sorry to hear about how u have been treated, I totally agree with Angela....u Must tell him(take a close freind with u, or hubby) and tell him how whne he Yanked your leg higher, it left u with Sciatica for a week!! that is terrible what he did, however, u probably only have One Rhummy there, so as Angela said, try and be firm, but with a sensse of humour, maybe he was having a bad day, we never know what is going on in other peoples lives, but do NOT let this time affect u for your future, he may reccomend that u see an Orthopeadic surgeon, I hope so, also take notes, and a freind, so u feel positive. well I cant add anymore, Angela has said everything, all of it is important....do NOT feel like u arnt Important, U r....do u have a good GP? pls go see him if u havnt, get some decent painkillers too.... pls come bk and let us know how u get on, this forum is an amazing source for info, and also for confidence ok.... lol we nag(in a kind sweet way) to go and see the consultants, take notes etc, and to be firm etc, good luck tace care Jill x
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Date: 16.12.2009
From: KayJay

Subject: Re: Hi A Newbie ....

Hi Angela + Jill. Thank you for your warm welcome !
I suppose I am very lucky in that the City in which I live has 3 major hospitals. There is a dedicated Rheumatology Clinic which I have attended for about 18 months. The only problem is that I have never seen the Consultant Rhumie, and the younger ones are always a different one I see. Apparantly if I want to see the Consultant I would not be able to see him until July next year !
I have been seeing an Orthopeadic Surgeon for about a year. The last time he said he thought that my problem was a " global " one and that if he fused my arthritis affected ankle there will probably be other problems thay may crop up after? I think he's waiting for a firm diagnosis before he get's the knife out. He also put in his report that following the Rhuemis examinination I was in great pain.

Anyway - one day - I might get a proper diagnosis - or there just might not be one ? but I must admit I'm losing heart with it all now.

My GP is fantastic. She really seems to care and she has given me stronger pain killers [ Solpadol I think ]. She also told me I had Fibromyalgia last year but , to me , that does not explain the specific pain and swelling?

Angela you ask what I think is going on. I can only say that at age 55 I feel more like 85. I have to walk with a stick and feel so tired and painful all the time. So I really don't know. Forgot to say that the Rhumie also referred me to a Neurologist as well. That's next month as well.
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Date: 16.12.2009
From: Angela

Subject: Re: Hi A Newbie ....

Hiya again Kayjay, It sounds like you have great support from your G.P. and your Orthopeadic surgeon.
Why dont you aproach them or write to them, telling them your predicament regarding always seeing different Rhumies,and mention the bad experience with the sciatica again.
Stress your need for consistancy in seeing just one specialist because the whole experience is causing you so much stress, and ask if they would mind supporting you to get an appointment with the main man.(you dont have to mention the nuerology appointment unless they ask).
They would have far more clout than you or I, and could get the ball rolling a lot quicker.
Why dont you give it a try, if you do and you get the support you need you will be feeling 55 again before you know it.
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Date: 17.12.2009
From: Lynne

Subject: Re: Hi A Newbie ....

Hi Kayjay
Have you got a rheumatology specialist nurse st your hospital. If you have try and ring to go in and see her. They are extremly experinced more so that the young docs. She can give you the once over and although she cannot diagnose you they usually nip next door and consult with the specialist to confirm whats wrong often the specoialist will nip in and see you to verify. it maqy be a back door for you to get and see him worth a try. Like I said these specialist nurses know almost as much as the consultants. Good luck
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Date: 17.12.2009
From: KayJay

Subject: Re: Hi A Newbie ....

Thanks Angela + Lynne. I shall try to push it a bit more through my GP. It seems like every time I go to Rh clinic they scratch their heads in exasperation and I feel like I'm wasting their [ and my ] time. For example. I kept getting recalled to have bloods done but when I turned up for them they said that they couldn't tell me why this was apart from raised ESR and that they usually only re call when medication was given? As the Rh clinic has never prescribed me anything I'm beginning to wonder if they have some files mixed up or something !

I've never met a specified Rh nurse yet only the younger doctors. This is in Sheffield and like I said it does have a large Rh clinic.

I went to the Podiatrist today [ forgot to mention I'm also type 2 Diabetes ] and she said the mix up may be because I attend Rh clinic in one hospital and Ortho in another as they don't always communicate very well with each other. So I'm stuck in the middle.

Thanks for your support guys :)
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Date: 05.01.2010
From: KayJay

Subject: Re: Hi A Newbie ....

Hi all should be going to the Rhumies tomorrow but I'm snowed in here so might not be able to make it ?

I'm wondering if anyone else has had my problem ? Its mainly in my hands [ my feet hurt too ] especially the middle finger. It hurts and feels like its twisting round [ away from my thumb ] thats the only way I can explain the pain. And it really hurts when I try to make a fist. My knuckles are swollen as well. The ultra sound has shown mild synovitis in the affected middle finger. Has anyone else experienced these symptoms please ?
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Date: 05.01.2010
From: Verity

Subject: Re: Hi A Newbie ....

Hi KayJay, my hands are pretty fooked (scuse the language but its the best way to describe them lol) Apart from my thumbs, I can only straighten my right pointing finger! Yeh, I point a lot now lol
Arthritis does make fingers twist away from the joint so do you think maybe this is what it doing? How are your hands in general with regards to long term damage?
Hope youre otherwise well x
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Date: 05.01.2010
From: KayJay

Subject: Re: Hi A Newbie ....

Hi Verity - thanks. I've been diagnosed with OA and Fibromyalgia so I get pain all over really. It's just that I didn't think that swelling happened with Fibro. I have knobbly joints on both hands but this new twisting pain is something new. I had a raised ESR blood test but the Rhumie says it's not an inflammatory arther but the Ortho guy said he thinks it is and he wont operate on my ankle until it's sorted out. So I was hoping I could make the Rhumie app tomorrow but it looks like it's set in here and all buses have stopped running. Doh !!
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Date: 05.01.2010
From: Verity

Subject: Re: Hi A Newbie ....

Oh bloody hell, thats typical isn't it! Im at work at the mo and lots have people have gone home because of the snow yet its not even snowing where I live lol
It must be frustrating with the docs not knowing whats going on. If they worked together then maybe theyd come up with an answer! Never gonna happen I know!
When my hands are hurting I find that running them under cold water and then something hot can help soothe the pain. I use the hand dryer at work but a hairdryer or a hot water bottle would do the trick I suppose? Failing that make sure youre full of painkillers until you can make it to your appointment x
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Date: 05.01.2010
From: KayJay

Subject: Re: Hi A Newbie ....

Thanks Verity - the snow is still coming down here in Sheffield. Yeah I do the same with my feet - one minute with hot wheat bags - the next in front of a fan !! seems to work for me I shall have to try it with my hands. Hope you can get home okay !!
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Date: 05.01.2010
From: Lynne

Subject: Re: Hi A Newbie ....

Sorry to hear your having so much trouble getting your diagnosis, unfortunatly its not that uncommon as any form of arthritis can mimic symptons of other illnesses. Its a good idea to do what jill said take someone with you who can listen and take in what the doc says, plus can step in and ask the questions if need. Its not always easy to do that yourself. Plus yake a list of all your aches and pains,, ..sometimes we forget to mention everything. Also have a list of questions ready that you want answering. Good luck
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Date: 05.01.2010
From: KayJay

Subject: Re: Hi A Newbie ....

Thanks Lynne. It's just very confusing when 2 professionals have a different opinion. I think what I will do [ if I actually get there tomorrow!!] is to ask them to discharge me from the Rhuemies because they have done nothing to help me. I've been going now for well over a year and they hum and ha then say make appointment for 3 months. I've asked all the questions I can so I can't see point of wasting their and my time anymore. At least it can't be anything bad otherwise I'm sure they would have found it by now. Thanks for your support :)
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Date: 05.01.2010
From: Lynne

Subject: Re: Hi A Newbie ....

Hi Kayjay. I know its frustrating but try not to give up on the rheumy just yet. The fact that he is seeing you every three months suggests he is taking you relatively seriously otherwise he would just fob you off and tell you to come back in six or twelve months. Believe me ive had RA for over twenty years and am well used to the ins and outs of rheumys.
It's hard but it helps to be persistant with them. Also RA well any arthritis can mimic the symtoms of other related illnesses and there is no specific test to diagnose RA just test that rule in or rule out certain things then it's down to the best guess of the rheumy. you may be in the early stages and so maybe not showing all the classic symptoms, i seem to remember it took me well over a year to get diagnosed. I was on and off sick from work for over two years before that, I got the feeling people thought it was all in my head. so i can understand your frustration.
Please persiver (soz can't spell) it is inportant you get diagnosed as early as possible plus the treatment for every form of arthritis is the same so ask one or the other of your specilaist for some meds in the mean time. Whatever form of arthritis you have the meds will slow it down and therefore you will have less damage for the future. Which means a more mobile future.

Good luck and let us know how you get on xxx
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Date: 05.01.2010
From: KayJay

Subject: Re: Hi A Newbie ....

Hi Lynne thanks so much for your support :) Sorry to hear you have RA. I don't think that's what I've got as they have done all the bloods and the only thing shown up was an elevated [ spelling?] ESR. I didn't know there were other arther conditions apart from OA [ which I've been diagnosed with ] and RA. The GP said I've got Fibromyalgia as well which makes it even more difficult because I seem to hurt all over !! Although I've not had the painful swelling fingers before. But I will take your advice and persevere [ spelling ? ] Thanks so much :)
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Date: 06.01.2010
From: Jill

Subject: Re: Hi A Newbie ....

Hi kayjay, I agree with Lynne, I like Lynne, have suffered for so many eyars with this condition, also we have come across the problems in clinic appts, waiting lists etc, so we know quite a lot about the rotten system,sometimes it works well, othes find it bad, i havd had a mixture of crap in the past....... Please Dont stop going, Like Lynne said, they r taking u seriously, artha ia a hard condtion to diagnose properly.....they MUst be sureU need all the heklp u can get....I have Trigger fingers and thumb in all ten of my fingers and thumbs LOL, when i getr a flare up, terrible pain, we all know what pain is, and we understand how yu r feeling...... Kayjay, one of my Rummy says I have R.A. the other Inflamatory Arthritis, same as R.A. or similar and treatment is the same.... my GP has me down as having R.A. there are hundreds of different types of Arthritis, the most common are R.A. O.A. P.A. I.A. at end of the day, pain is the same......think u need better painkillers, what is your GP like?? can u tell him/her your experience at the Hosp? pls stay at the rhummy clinic, as its hard to get the referal all over again, and takes months, this way, at least u r an ongoing patient, they are also the people U need to see if U need to go on to DMARDS, GPs wont give it to u....has to be a rhummy , I beleive? take care and keep strong x
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Date: 06.01.2010
From: KayJay

Subject: Re: Hi A Newbie ....

Thanks Jill I took your and Lynnes advice and fought my way to the Rhumies. My sis had to come with me though as I have to walk with a stick so I'm not good in snow. Apparently I was the only one to turn up for my appointment!! But I was determined to go because of the pain in my middle finger - could hardly get dressed this morning with it.

Anyway I've had Xrays done of my lower back and neck. Also the doc gave me a steroid injection [ in my butt!! ] and said that if the swelling and pain settles down with that then it's Inflammatory arther. I have to go and report back in 6 weeks to see if the steroid injection has done the trick. If it does then he says he will put me on Hydroxychloroquine, he gave me a leaflet about this medication.

So I'll just have to wait and see. My GP is ace she is lovely. I have got strong painkillers [ Solpadol I think ] . Thanks so much for your advice :)
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Date: 07.01.2010
From: valh:-)

Subject: Re: Hi A Newbie ....

got fed up with this snow now making me ache something rotten lol it so hard walking in it and staying up right the hydroxychloroquine seems to be helping swelling not gone yet but do feel much better even feel as if have some energy life does not feel so depressing
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Date: 07.01.2010
From: Lynne

Subject: Re: Hi A Newbie ....

Pleased to hear that you both got some medication at last. It will make a difference. Bare in mid though it may take two to three months for the meds to kick in and for you to feel the full benefit.
Good luck girls

Im with you on that one val we've got snow again and the temp dropped to -5 last night... making my back ache something terrible
crossing m fingers for warmer weather soon xxx
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Date: 08.01.2010
From: jill

Subject: Re: Hi A Newbie ....

KayJay well done for going.... at the end of the day, pain is pain.... but it is good to get a correct diagnosis....fingers crosssed your finger gets well soon, nowt worse than pain in the hand.....mind u, pain anywhere is a pain is the ass!! take care Jill x
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