Help

[Caza]

Help

Hi I haven't posted on here for quite awhile, although I come on here & have a read most days.

I could really do with some advice, I was diagnosed with RD just over 2yrs ago, I've had two steroid injections which worked really well but only lasted for about six weeks each time. I take Hydroxy which up until recently has done a fantastic job. A few weeks ago my hands especially my thumbs became extremely painful, I'm finding it very difficult to use them. I've little strength in them & can't grip things. The other morning I lost the grip on a bowl of fruit & yoghurt ( so wasn't even heavy) I couldn't even pick it up, I just sat & cried. I think it finally hit me after trying for the last two yrs to carry on as before. I haven't even told my family. I did try & tell a friend who's reply is all to common 'I get a bit of that in my knee'. Anyway I digress, I can't take painkillers, so is there anything at all that I can do to ease the pain in my hands & also help with the stiffness?

[Hidden]

I'm so sorry to hear you have this problem Caza. Have you tried wax baths to help with the stiffness? The heat might also go some way to ease your pain a little. There are also special gloves you can buy that do a similar thing. This is just one example:

amazon.co.uk/Medipaq%C2%AE-...

[Caza in reply to Hidden]

Thank you, have ordered a pair.

[farm123]

You need to contact your Rheumy nurse or GP and explain the situation as it looks like you need to have a review of your condition and medication. Some days I use warmth to ease pain, other days cold is better or compression gloves - it is trial and error as to which is best on that particular day. Many rheumy department have contact with a specialist occupational therapist (hope that is the right name) who can make made to measure splints but I believe your first step should be a drug review.

I also like the gloves linked above - they do wash and wear better than some of the flesh coloured ones and coming into winter people assume they are normal fingerless gloves. Farm

[Caza in reply to farm123]

Thanks for your reply. I've ordered a pair of the gloves. I was going to say fingers crossed that they work but that would be to difficult! I don't have a nurse nor will my gp talk to me about RD. My next rheumy appointment is the beg of feb so was hoping to last until then.

[farm123 in reply to Caza]

I would try ringing your consultants secretary to see if there is anything free before then. Farm

[Caza in reply to farm123]

If their no better by next week I'll go & see my GP & I'll write to my consultant. Thanks for replying. I've ordered the gloves & supports for my thumbs.

[Amapola]

Hi, I agree with farm123 give it a go to the warm and cold method.

Is different for the person and for the pain that u r having....

Also I think is good that you talk about ur RA with your family and friends. They would give you support and believe me, sometimes a hug or a chat over a cup of tea do us good.

Life is different with RA never the same as we used to live but is not impossible.....

Hope u feel better soon

[Caza in reply to Amapola]

Thanks, I'm sitting here with a hot water bottle on them & it is helping. I really have tried to tell people but find that really don't get it. That why I love this forum.

[Caza in reply to Amapola]

Thanks, I'm sitting here with a hot water bottle on them & it is helping. I really have tried to tell people but find that really don't get it. That why I love this forum.

[jeanjack]

Hi Caza, I think we can all relate to the pain you are in right now and although we try every day to find some new way to ease our suffering I think the only way you are going to get this sorted out is to take farm123's advice and contact your Rheumy nurse or GP for an appointment to review your RD and medication. This has happened to me on a couple of occasions and only when I have got to the tearful stage I realise my RD has taken on a different strategy to have a go at me. It has always resulted in a trip to my Rheumy and a change in medication then in a few weeks I am pain free again. Until the next time!!!

So don't delay get an appointment and hope you get some relief soon.

Jean

[Caza]

Thanks Jean, I know your right very reluctant to go onto stronger meds as my stomach doesn't respond well but if I'm still like this when I next see my rheumy then going to have to.

[gwen2013]

you really need to go now flower, by the way i read it you cant wait till feb, and i think sweet heart you will be a bit silly to do so, if your pain is so bad get to a & e, you never know they might help, xx

[Caza in reply to gwen2013]

Thanks gwen, if their no better by next week I'll go & see my GP, although she's not been that helpful in the past with regards to the RD.

[Hidden]

I agree with the others but also ask your GP to refer you to a rheumy specialist occupational therapist, not only will they help with splints etc but also give advice about how to make life easier for you.

My OT has been a life saver, when I first saw her I wondered if it would be worth it but she was all about educating me to try to prevent damage rather than rectifying existing damage.

[Caza]

Thanks pauline, that's given me food for thought.

[jeanjack]

Hi Caza, ( Jean again ) I agree with gwen 2013 I don't think you will be able to last until Feb to get sorted. Please don't feel you have to. I find these days that you have to do the running to get appointments earlier than scheduled. As you say you don't have a specialist nurse to speak to then find out the contact number of your Rheumy's secretary and explain to her how bad the pain is and ask if you can see or speak to someone soon. This is what I had to do a few weeks ago and it worked.

I know that the meds are not nice to take and all have side effects but keep trying and you will find one that suits you best. It's better than having to suffer the terrible pain that comes with untreated RD.

Best wishes.

Jean

[Caza in reply to jeanjack]

Thanks Jean, I know you are right. I guess I'll get there in the end. I'll give the gloves a try & then see. I think my Rheumy would see me earlier if I wrote to him which I will if I'm still in this amount of pain next week,actually its not so much the pain but the lack of mobility.

[cathie]

The hospital I go to asks you to get the GP to contact the rheumy's registrar. Or perhaps there's an emergency helpline at the hospital?

[Caza in reply to cathie]

I'm not sure, I'm fairly new to this. As far as I can work out they work independently but I might well be wrong. I'll see how I go, I don't think its a flare as I normally feel really ill & all my joints are affected, this is different it's just my hands. Who knows.....

[krysia]

Like you i'm on Hydroxy. also had this problem with my hand's more the right one then the left and had steroid injections in them. Eases the pain a lot you can have the jab's 3 times a year. Mine started a couple of year's ago as I had pain and discomfort mainly in my right thumb. It was at Christmas time and had problem's wrapping the pressie's up. I also have time's when can't grip thing's but fine after a jab.

[Caza in reply to krysia]

That's interesting,sounds exactly like my symptoms. Mines my left hand, I'm right handed but I hadn't realised how often you use both. Just something simple like holding a mug whilst holding a kindle let alone chopping veg & as you say wrapping presents the list is endless. The special support gloves I've ordered should be delivered soon & I'm hoping they'll make a difference if not I will take everyone's advice & make another appointment.

Do you think being on hydroxy is enough to keep the symptoms at bay?

Thanks for replying.

[krysia in reply to Caza]

Yes it does help to ease it been on mine for about 4 years now of course you get good and bad day's for a few weeks now my hands have been o.k due to having the jabs. Good luck x

[Caza in reply to krysia]

Thanks for replying. Hope the steroid lasts a long time for you.

[helixhelix]

since we're not medically qualified we can't tell whether hydroxy is still enough for you to keep the disease controlled - which is why I agree with others who are urging you to push for an earlier appointment. you could get a lot of damage in 4 months if your RA has decided to get very active, let alone having a miserable time!

[Caza in reply to helixhelix]

Hi Helix, I just wondered what her thoughts were, I know only my Rheumy can tell me about my condition. I'am going to take everyones advice & ask for an earlier appointment. Thanks for the reply.

[Beverley-NRAS]

Hi Caza,

Sorry to hear that you are finding things difficult at the moment. I agree with what has already been said here.

It can be difficult letting your friends and family know what is going on and it is something that we hear on the helpline quite often. if you need to talk to someone please feel free to ring us on the helpline on:

0800 298 7650 Monday - Friday 9.30am - 4.30pm

We also have a very good publication on emotions and relationships which you may find helpful. I have put a link to it below for you:

nras.org.uk/publications/em...

Hope you manage to get to see your rheumatology team soon and that things improve for you.

Regards

Beverley (NRAS Helpline)

[Caza]

Thank you Beverley, it's hard to tell people without it sounding dramatic but for me & everyone it's life changing. I don't want my family & friends to feel sorry for me just understand that I can't be the person that I was. I'll get there & have taken on board advice given. Thank goodness for this site.