Newbe

[LIZMAC10]

Hi everyone I'm new to this , I am waiting to see the rheumatologist! ! My doctor is sending me there . I have pain and swelling in my knees hands and feet, most mornings when I wake up I can hardly walk with the pain

[Jacki08]

Hi Liz----- I was diagnosed with rheumatoid disease in Sept so am still a relative " newbie" myself, but I would just like to offer one piece of advice. Please don't let anyone in the medical profession fob you off- keep pushing for a definite diagnosis. I wish I had done as it took 4 yr before I got diagnosed, by which time irreversible damage had been done. Good luck and pop back on here anytime----- I couldn't have managed without the advice that caring people on here gave me x

[LIZMAC10 in reply to Jacki08]

Thanks Jacki08. Yeah I will keep at them till I get a answer, I read a lot of the posts on here and people really seem to take time out to help others which is great they all seem to care. Which doesn't happen a lot these days x

[Jacki08 in reply to LIZMAC10]

Yep--- I found that---- I was so scared when I was diagnosed-- frightened to take the medication too, but the few side effects outweigh the difference they have made to me. I am just starting my 4th month on meds and , although not pain free by any means , I feel 75 per cent better than I was xx

[LIZMAC10]

Are you still able to work jacki08? That's what I'm worried about , not been able to keep at my work x

[Jacki08 in reply to LIZMAC10]

Yes- struggle sometimes as I am a self employed chiropodist -- and need to work to pay bills. Must admit it's easier now I'm on medication --'I just adapt the way I hold my instruments etc--- as most of my pain is in my hands and shoulders. Just remember ---- you might not be at the top of your consultants priority list, but you are at the top of your own list!!!x

[LIZMAC10 in reply to Jacki08]

I'm a support worker, work with people with learning difficulties and some times it can be quite hands on. So I keep thinking about how long can I still do it but there's no way I could just sit in the house and do nothing , not on my nature x

[mattcass]

Hi Lizmac10, If you are struggling with pain you must tell your GP he will prescribe painkillers for you and ask him to chase up the Rheummy appointments or if you know where you are going and who you are seeing then contact them yourself can't do any harm.Good Luck matt

[LIZMAC10 in reply to mattcass]

Hi I did see my doctor about the pain , he gave me dehidacodine !!but I'm finding they are doing any good . Just wonder which would be the best pain relief to ask for ?

[nomoreheels]

Hiya LIZMAC10. Welcome. Both Jacki & Matt have given good advice. Do ask your GP for pain relief & an anti inflammatory if he didn't prescribed anything whilst waiting for your initial Rheumy consultation. They won't solve the problem but they should make things more bearable as depending on which Rheumy you've chosen it could be up to 3 months before you gave your tests & official diagnosis. My GP suggested I stopped mine for a couple of days before my diagnosis appointment so they had more reliable base line results, particularly inflammation wise. This gives a true reflection of whatever is affected & how interest you & what with.

if you think of anything else you need help with just ask, someone will be able to help you.

[LIZMAC10 in reply to nomoreheels]

Thanks nomoreheels I would never have thought about stopping the tablets !it makes sense . Thanks again .

[Hobbits]

Hello and welcome!

Worring about working is one of my greatest worries since being diagnosed. I was undiagnosed got over three years and have now irreversible joint erosion, but no deformity.

I worry about retirement and I'm only 46. As mentioned pain control will be part of they key.

My personal opinion is to work as long as you can, I think it's good for your overall mental Heath and makes you feel useful and productive. As people sometime complain they 'gotta get up and go to work' I wake up and am very thankful I can still work. I work in Healhcare and have a physically demanding job.

For now things are working good, but because RD is a chronic and progressive I know there may come a time where I can no longer work. I am open to that as I know it is likely to happen at some point in the future. But I keep hope that with

Medications I can get into remission

I know how you feel about job worries and an uncertain future. Start mentally preparing yourself now. I keep my eyes open for other opportunities within the same company that may be easier for me in future if my RA makes it impossible to do my current job, so I have a plan. Having a plan gives me some peace at least. Ex. I have a very physical job as a front line worker in healthcare....the organization has other job opportunities such as Supervisor positions which have lots of office administrative duties, way less physical but I'm sure with its own challenges.

I know lots of people with RA struggle with this issue, it's terrifing to really have no control, but a little planning can ease that huge weight.

Unfortunately some people with RA do not have time to make a plan as their RA comes on hard and fast.

Definitely, as mentioned in above posts, talk to your doctor about pain control, there are some really great meds out there to help you manage.

We don't ask for this disease, but together we can help each other cope with the hard times.

[LIZMAC10]

Thanks everyone for your kind words of advice . The doctor gave me some anti inflammatory's and dehidacodine for the pain . But at the moment it's just taking the edge of it some days. But I find when I get up in the morning it takes me a while go get going with the pain and stiffness so I find I get up an hr earlier when I'm on a early shift so I can get going . Anyone else gave this problem? Someone suggested apple cider vinegar and honey ? Has anyone tried this ?

[nomoreheels in reply to LIZMAC10]

Morning stiffness, anything up to an hour, is par for the course I'm afraid. I'm pleased your GP prescribed you something but if it's not covering the pain & inflammation do see if there's anything else he can give you. I've heard of apple cider vinegar but not tried it myself. I'm not one for remedies but others report it helps. I suppose it depends if you believe in things like that. I tried Epsom salts in the bath when I could still get in & out of it & that didn't do anything for me but again for others it helps.

[lainee]

Hi and welcome to the site you will find it a great help during the journey as there is always someone to give you support. I started just like you and was so confused and scared as it is a horrible feeling losing mobility. I have been on treatment since June and amongst the ups and downs i have improved greatly in this time but have the same misgivings about you about working. I think the advice given by Hobbits is sound. I am lucky that i am able to still work as I am mainly office based but working for me keeps my brain active and something else to think about but I am thinking about the long term and considering what i might do if i need to as we can only do what we are capable of. It is hard some days without doubt. One thing that has helped me is swimming. After reading another post about this i give it a go. At first i just walked in the pool and then started to swim gently and built it up with a combination of walking and swimming. I know this is not easy when you are working but i cant recommend it enough if you can. Hope it goes well for you xxx

[Hidden]

Hi LIZMAC10,

Good luck with your first appointment at the rheumatologist, hopefully you'll find out the cause of your symptoms. If you need any extra help or information, please visit our website at nras.org.uk or call our helpline team on 0800 298 7650. They can give you an idea of what to expect and some good questions to ask in your appointment.

Best of luck,

Ruth Grosart

NRAS Digital Media Manager & HU Admin

[LIZMAC10 in reply to Hidden]

Thanks for that Ruth I will take time out tonight to have a good look at the site . Liz