Help with rheumatoid pain

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by Guest Posts on Tue Oct 25, 2016 9:14 am

Help with rheumatoid pain

On behalf of our guest visitor, Kirsteen,
I would like to find out how do I go about getting help with the amount of pain I have and having rheumatology listen to me when I mention it. I'vé only had diagnosis since March and focus has been my hand/s. As this was the reason I got referred there in 1st place. The problems I have with my feet and mobility due to pain was seen at a different hospital and at fracture clinic and which after 4 steroid injections 4 registrar's (rotation?) later and 1st and last time I saw an actual consultant. She told me in an area full of people who having plaster removed or added she announced it was because I was fat. I replied by trying to explain I wasn't fat at 1st appointment but in yrs since and coz of intense pain I had gained weight. She told me I was lying and to join a gym. Then I was dismissed. I've been left ever since that was 5 yrs ago. I'm prescribed 500mg Naproxen which Rheumatology suggested I stop taking

Sulfasalazine 1000mg twice daily
Pregabalin 225mg morning
Pregabalin 300mg evening
Duloxetine 40mg twice daily
Oxybutynin hydrochloride 10mg daily
Zapain 30/500mg X2 when required
3 different types inhaler and a nose spray and it feels constantly blocked for past 2 yrs.

I'm in pain from minute I get up to time I get to bed if I can make it up the stairs to get to bed. I've been turned down for pip which has my depression and anxiety n stress levels going up and down and sleep isn't great so constantly tired by that never mind the fatigue that RA causes. But my last Rheumatology appointment was 15th September and was told that all is well because my CRP down to 8 and hands not showing signs of swelling of redness anymore etc. Said my feet agony was told will be referred to podiatry for new insoles (last hosp got inserts made) to sort them out. Then consultation brought to end, no advice or interest in my pain. The nurse said that it should be fine now my levels down and not showing signs in my hands so felt as if was thought I was making it up coz hands not swollen. writing this and I'm in pain and it increasing if do it for a long time but my feet only ever get worse. Even if laid up for a week they are sore from the minute I get up then eases up before a different burning pain from inside biggest part of feet but with shooting searing pain coming from heel and inside edge towards ankle which intensifies n burns with each movement. but to touch it's weird as not always does touching area cause a reaction even if putting on floor or resting on something causes pain. To me, it sounds like I'm telling stories when I read how I try to explain but I just can't verbalise how the pain is or where it's coming from as sometimes it feels painful in my head or my pulse causes it.

Can anybody help or advise me pls?
talkhealth team on behalf of a guest visitor

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by Arthritis Action on Tue Oct 25, 2016 7:37 pm

Re: Help with rheumatoid pain

Hello,

I'm sorry to hear your story- it sounds as though you have been through a terrible time. Rheumatologists are doctors who aim to prevent joint damage and disability in people who have inflammatory and other types of arthritis which is caused by a problem with the immune system. Once the inflammation has been controlled by drugs such as sulfasalazine, some people still have pain and that can be difficult for both patients and doctors to understand. Have you had an ultrasound scan or MRI to make sure that there is no inflammation left (swelling) in your joints? If not, it might be worth requesting one. If the swelling in your joints has reduced and you still have pain, you may well have fibromyalgia, and a look at your medication list suggests that other doctors have considered this diagnosis too. Inflammatory joint disease such as rheumatoid arthritis causes swelling, pain and stiffness that is worse in the mornings and better with exercise. If your pain is worse with exercise, this may be fibromyalgia pain rather than rheumatoid arthritis pain. Perhaps you should read something about fibromyalgia and perhaps suggest a referral to your local pain clinic.

Wendy

Dr Wendy Holden
Consultant Rheumatologist and Medical Advisor to Arthritis Action
www.arthritisaction.org.uk /
info@arthritisaction.org

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by Arthritis Care on Mon Oct 31, 2016 3:28 pm

Re: Help with rheumatoid pain

Hi Kirsteen,

I'm sorry to hear that the situation is so difficult at the moment. If you've had a long journey to your diagnosis so far - and you seem to feel that it's not yet fully helpful I wonder whether you might find some more practical self - management options might be worth exploring. Managing pain and arthritis can involve both finding information from the medical people, but also practical things to do with lifestyle, keeping moving and so on.

I'm attaching a link to our booklet about pain - the part which explains the pain cycle can be helpful.

You'd be very welcome to ring us on our freephone - because you telling your story can be very important. I hope we can help further.

https://www.arthritiscare.org.uk/what-i ... -with-pain

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