Can you help?

Do you have a question related to an arthritis condition that doesn't fit in any of the other boards? Perhaps you're living with spondylitis, spondylosis, rheumatica, polymyalgia, fibromyalgia or something else we've not covered? Your questions and discussions can be posted here.

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menaconroy
Posts: 1
Joined: Sun Jul 23, 2017 4:32 am
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by menaconroy on Thu Oct 05, 2017 1:56 pm

Can you help?

I have been ill since late June with severe fatigue, skin rashes mainly on my face and chest which blister and some of these I still have despite using cream prescribed by the doctor last July. I am suffering from extreme pain in my fingers, hands, wrists everyday and they swell up, turn red and very hot and it is very difficult to use them. My feet are the same. I also have pains in my knees which affect my walking, back pain and shoulder and arm pain as well as pain in my legs.

I struggle to sleep more than a couple of hours at night so therefore often have to sleep another few hours during the day. As there is lupus in my family, my doctor took a blood test in July which showed a positive anticardiolipin IgM antibody of 229 U/ml. I was referred to my local Rheumatology clinic & should have waited 4 months for my first appointment. Because I went back to work and only lasted 4 days of working 6 hours all day (I work in retail) before I had to return to sick leave, my doctor asked for a cancellation to be considered for my hospital appointment and I managed to get an appointment last week.

I saw the consultant who has sent a letter to my doctor saying there are no signs of SLE although he has (and I have had) two further blood tests and x-rays to reassess the situation and will review the results. He gave me no advice on pain relief etc although I am still taking co-codamol prescribed by the doctor. The painkillers don't seem to be so effective anymore and I am in constant pain. I also have a history of kidney infections and stones.

Recently I am struggling to pass urine, it is a little painful and sometimes I can only pass a few drops. My temperature fluctuates up and down so much and I can be freezing cold one minute and boiling hot the next. My feet seem to get really cold and it takes forever to warm them up, then they become swollen, red, hot and painful. I have sore throats and a cough constantly and at night my head sweats terribly. I am due back at work next week but right now I have no idea if I will make it again. I feel so tired all the time and cannot remember that last time I had a pain free day.

The consultant did tell me that I have osteo-arthritis in my fingers and wrists but other than that and the fact he will contact me if necessary following result of the blood tests and xrays last week, I do not have an appointment to see Rheumatology again until February.

Please tell me what you think I should do, I frankly do not feel well enough to return to full time work next week and my employers are not all that sympathetic with giving me a phased return, the 6 hours a day did not help at all.

Thank you.

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Arthritis Action
Posts: 97
Joined: Wed Sep 28, 2016 1:27 pm
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by Arthritis Action on Wed Oct 11, 2017 6:32 am

Re: Can you help?

Hello,
It sounds as though you are worried about the possibility that you may have lupus and are also worried about your loss of function. Rest assured that if your rheumatologist thought that you do have lupus, this would have been explained to you and you would have been started on some medication and they would almost certainly have arranged a sooner appointment. As part of your assessment you will have had a wide variety of tests including tests on your urine to make sure that you do not have any signs of infection or problems with the kidneys, and your joints will also have been examined to look for signs of swelling. It can be very helpful if you do have rashes or joint swelling that your doctor hasn't seen if you can take a photograph to show them on your next visit. The anticardiolipin test is not a diagnostic test for lupus although can be connected with lupus and can also be found in some people who will never develop any serious problems. Some of the things you describe could also fit with a condition called fibromyalgia that causes widespread pain and loss of function and it may be that this will be discussed if all your other tests are normal. Your GP should be able to access some of your blood test results and may be able to help you right now but it sounds as though you need to discuss how you are feeling and your investigations with the hospital who can hopefully reassure you and give you some advice. Meanwhile you should try to do some gentle exercise, try to keep up your energy levels by improving your sleep and eating a healthy diet, and if the painkillers are not working you should stop them as they can do more harm than good. It may be that medication to improve your sleep quality may be more useful than painkillers that are not working, and you might like to try relaxation techniques or distraction to better manage your pain. Your GP can advise you on a return to work and it is definitely worth speaking to your employer's occupational health department as worry can increase your pain levels and that will make you feel more tired as well.

Wendy
Dr Wendy Holden
Medical Advisor to Arthritis Action and Consultant Rheumatologist

Arthritis Action
56 Buckingham Gate London SW1E 6AE
020 3781 7120 http://www.arthritisaction.org.uk

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