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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010
Posts: 88
Location: Saddleworth, UK
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Happy New Year to All!!,
My story is probably common but I need to get it off my chest! Sorry.
I went to my GP's for more drugs on Prescription. The Dr I saw noticed the swollen fingers and how painful they looked (Wow - its unusual to get someone medical to see my inflamed bits - when I actually get an appointment my flare has subsided! She told me to ring the Rheumy service as waiting until March was too long for me. On 21st Dec I rang for an emergency appointment with a Nurse/Consultant, left a message they rang me back the next day and I got an appointment for 9.30am 30th Dec. After a great Xmas at Mum and Dads then Boxing Day buffet at our house I was pretty shattered! My fingers have knobbles all over the sore joints that hurt like hell when I catch them and were still swollen and my knee was killing me at night, then my hip joined in (full house!!) I was in bed with my Walter (hot water bottle) the dog and cat, drugs and hot drinks. Felt bad that I couldn't do anything but the kids can look after themselves and my husband. Come 30th Dec I went for the appointment, took my mum along for support!
I've seen this consultant before when he gave me a leaflet on Fibromyalgia and reduced MTX to 15mg as he thought my RA was under control as no evidence on Ultrasound of RA! There was evidence in 2008 - where did it go!!! Any way I am rambling... This time he asked me why I was seeing him today and I said I am having a flare and it has lasted since 17th Dec. He then asked my why my MTX was reduced! I explained to him that HE reduced it as HE thought my RA was under control and suggested Fibro and put me on Pregabalin and Amitriptalin. He examined me and prodded my sore joints and twisted my knee (which really hurt my hip) then said that he couldn't see any sign of a flare, but as I am in pain I must be flaring!!! He arranged a Depo and then a appointment with nurse in a few weeks but didn't want to increase MTX again just yet and to see how I go! He also didnt know what the kobbles on my knuckes were. He didnt think they were a drug side effect or anything to do with RA!!
MTX makes me feel lethargic, makes my hair very thin, that's why I was soo pleased to be reducing it but to be told that I might be going back up and be told that he couldn't see my flare and my bloods are normal makes me feel a fraud AGAIN!
I AM in pain, my joints DO swell, I feel exhausted, cant do the active things I previously loved doing (DIY, gardening etc) when I want to because the flares and pain rule my life socially and in general! I am on Sertraline 15mg, Amitrip 30mg, Pregabalin 75mg, MTX 15mg, Folic Acid and co codamol and I only feel better after a steroid inj - but hey there's nothing medically wrong with me!! Hello!! I feel very angry. I cant work because I don't have many days that are good days. I have had CBT, OH, Physio and I'm still suffering!
Has anyone else been through similar or is it just me?
Lxxx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Louise
Sorry to hear that you are having such a terrible time, and can understand why you feel in such a turmoil with all this. I am not expert on drugs and the issues relating to normal blood results and feeling like you do. I m wondering if the mtx, is actually working for you at all or possibly some other medication should be considered, has there been any mention of doing your DAS scores for possible consideration onto ant-tnfs even ?
I am sure others will give you some guidance on all this, and hope things improve for you very soon.
Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi I think it's time for a second opinion don't you? Fibromyalgia is a rotten condition in it's own right but it doesn't do joint pain But swelling at special points It's tough going with fibromyalgia as it's all life style and pain killers but not progressive. There's a criteria- it's not a rough guess! The consultant you saw didn't have their ideas on your treatne t straight and that does t fill you with confidence I'm afRaid ra is progressive and it goes in jumps and starts. When you are first I'll it does look in a strange pattern of agony then settled, then moves somewhere else then seems to bumble along and then really annoys a joint or 3 then settles as quick as it came Emily and Brenda had this sort of first few yrs Many do You want a specialist in early rheumatoid ideally Much love and support Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Louise
I agree 100% with Jenni. You do need a second opinion and you are entitled to one. I would ring tomorrow and get as early an appointment as you can. Good luck.
Sheila x
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Rank: Advanced Member
Groups: Registered
Joined: 10/20/2011
Posts: 50
Location: Coventry
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Hi Louise
I had similar experience a few years ago and eventually asked my GP to refer me to another consultant.Best move ever - my new rhuemy is fantastic.
Please go to your GP and ask to be referred elsewhere ,you deserve better than your getting at the moment
Julie xx
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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010
Posts: 88
Location: Saddleworth, UK
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Thank you Jenni, Sheila and Julie,
I agree that the consultant didnt review their notes before seeing me. I have seen 4 different consultants in 21 years since I first had a problem with just one finger: The first was really nice and took time and listened to me and told me then that I probably had early RA but as it comes and goes there really wasnt anything he could do. After that I just carried in taking pain killers. It gradually got worse but after a divorce and bringing up 2 kids I found the man of my dreams, then I decided that I couldn't take the pain any longer as it was in my wrists, my GP referred me to another consultant as the first one had moved on. I saw him and he said I had Palindromic RA but until it became full blown RA I just had to take pain killers, they went through the Raynaulds Syndrome and dismissed that, then that consultant left so I was referred to this new practice. The nurses are great, they listen and seem to know me, even in Tescos!
I have tender points in my shoulders, feet, elbows and hips. My knees and fingers swell. My fingers are curving and the middle joints of my fingers are so enlarged that I cant fit my rings on. I have slim fingers but my knuckles are huge (so huge that I cant get my rings on - when I flare) Perhaps I need to take my rings with me then they can see the difference. Its just completely getting me down!!
I feel fantastic after the steroid inj and woke up yesterday with no nobbles! Yee haw!! I am enjoying being pain free - its great - I am going to make Cheese and Onion Flan for tea! (a big thing for me!)
Thank you for reading my rant and I take on board everything you've said and I will ring my GP and go and chat to him. Thanks again you are all fantastic.
Lxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Louise - I wonder if you could get to Bolton fairly easily? The team there is fantastic and I moved hospitals and now travel 16 miles to clinic. It has been worth every mile! xx
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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010
Posts: 88
Location: Saddleworth, UK
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That's an idea Jean. I've got an appointment with my GP in Feb and I'll have a good chat with him about it. The steroid inj has kicked in so I feel great.
Thanks so much
xxx
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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010
Posts: 88
Location: Saddleworth, UK
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Feel so low today! I (stupidly) went to Tesco on my own! I was only supposed to go to the chemist for repeat prescription, but I drove straight passed it! So I thought I'd tackle the shopping! I was fine until the 3rd isle to the end and I started shaking, my arm had gone and I was exhausted.... Just the 3 isles left (I kept telling myself). I loaded up the conveyor belt and the lady didn't need to ask if I needed help packing - she just did it! I struggled with the bags into the trolley and had to ask the cashier to open a drink for me! Stupid I know, but then I got to the car and it took me 15 mins to load the car up and got in and tried to open a sandwich - struggled like mad but I was so determined to open it that I didn't realise I was crying until I put the sandwich to my mouth! How on earth do other people get on with the simple things in life, like opening a bottle or juice or a packet of crisps and a butty!!!
Any way I've got my prescription now and am hoping for a nice night sleep - last night my right shoulder, elbow and wrist kept me awake with a dull ache and I just couldn't move it to a comfy position. My hip has joined in now, probably holding washing liquid on my hip (like carrying a baby) before I put it in the trolley. Good job I made 2 lots of meals yesterday so I can reheat it for tonight - or my lot would starve, or have a take away!
If this pain isnt RA or Fibro then I am insane and need locking up! Straight Jacket please!
Lxxx
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Oh Louise!!! You really must pace yourself. You need to have a good rest now and promise yourself to take things easy. I Hope you feel better soon.
Sheila x
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Rank: Advanced Member
Groups: Registered
Joined: 11/9/2010
Posts: 73
Location: Surrey
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Oh Louise - how I agree with Sheila about pacing yourself.
How many times have I had a steroid injection and the following day felt like I could dance Swan Lake, landscape the garden or clean the house from top to toe - only to find a few days later that the garden still needs weeding, a quick flick of the duster will suffice for house cleaning and I'm feeling like the Dying Duck!
I've had RA for nearly 25 years and I'm still having to learn to control myself when I feel good - sometimes feeling normal, even though it doesn't last long, gives me a false sense of freedom to do all the things I used to take for granted.
However, there's nothing wrong with using the feel good factor when you can, within reason. RA should never put you in the dumps all of the time - and if there is some relief, then enjoy it!
Best wishes...
Ellie
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Louise
Just caught up with this post. So sorry to hear about your appointment, I appreciate how frustrating
it must all be.
Do try and rest though so that the drugs and inject doooo their work
Best wishes
Rose
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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010
Posts: 88
Location: Saddleworth, UK
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Thanks for your replies.
I do try to pace myself but its sooooo hard when you feel great!
I took so many co codamol yesterday that I was seriously thinking about A&E for something stronger. It just wont go away.
Lxxx
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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010
Posts: 88
Location: Saddleworth, UK
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Just a quick update:
I was told on 30th Dec that I'd need an appointment in a few weeks and the consultant would arrange it! I rang the rheumy clinic today as I hadn't received an appointment to see the nurse! I was told that the consultant dictated a letter to my GP that said the nurse would see me in a few MONTHS! How could I have confused weeks with months! I am obviously not bad enough to see the nurse in Jan but will be in March (which is when the appointment will be).
So not only did he not review his notes on me but when he said weeks he meant months! I must have been really confused in Dec!!
Lxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Not good enough, Louise. You need to be seen NOW. KiCK UP A FUSS AND ASK YOUR gp TO sort it out for you. (Sorry about the caps)
xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Oh Lordy! Woman of wonder approaching... Mega muscles buzzing brains and thinking I can leap one building in a single bound Yes oh yes I've had shots of steroid like that Pulses of it have had me looking at knitting monkeys on the curtain rail  Powerful stuff that steroid Not rushing off is key after steroid They used to keep you in hospital Make you bed rest for 24 hrs Now you know why huh?! Jeans right about the gp how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010
Posts: 88
Location: Saddleworth, UK
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I am going next Fri so crossed fingers (oh that'd be nice!!)
Jenni - you are great - every post makes me smile - whether its bad or good you put your humour in!
L xxx
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