Feeling Low

[Wonderfullifeandmore]

Hi, I haven’t posted on here for a while, I have been having lots of problems. I am currently on 400mg of hydroxychloroqine as I am unable to take methotrexate. I have severe burning in my back and now my stomach. I went to the A & E dept where they diagnosed neuropathy and put me in Pregabalin. It isn’t working yet, been on it less than a week. I am suffering with terrible anxiety and depression, I still don’t have an nhs rheumatologist and there is not even an appointment in sight for the future. My private one costs a lot of money and isn’t at the end of a phone so every time I need to speak to him it’s by appointment which costs money.

incidently apparently I have Inflammatory arthritis and PMR.

I am sorry for the long post but I needed to get this all written down.

Does anybody else relate to the burning sensation.

[PMRpro Ambassador]

Hi, sorry to hear that - but neuropathy sounds a strange diagnosis, Was gallbladder considered?

But one of the adverse effects of hydroxychloroquine is "changes in how your skin feels such as tingling"

[SheffieldJane]

I don’t want to cloud your picture with my symptoms but I too think that neuropathy is an odd diagnosis. I get burning feet at night and tingling hands sometimes which I assume is neuropathy. I wonder if a neurologist would be a logical step? Given that there seems to be a dearth of curious, competent Rheumatologists in your neck of the woods. Are your GPs any good? I tend to go to them with the myriad of side effects from the drugs we take - the joy is very limited.

Even if your depression and anxiety is perfectly understandable it would help to seek treatment for it. It might help you to cope with everything else that is going on.

[Wonderfullifeandmore in reply to SheffieldJane]

My GP’S know nothing about rheumatoid arthritis and to be honest I’ve rung them for so many different things lately, they tend to Fob me off as a nuisance. For instance I had a CT scan on my lungs and a nodule was found the Dr at the hospital advised my GP to refer me to the respiratory clinic that was in June. I phoned the clinic they said unless the Dr used the 2 week pathway the appointment will be next year sometime. I was beside myself with worry, phoned the surgery the receptionist firstly they just left me ringing hoping I would go away then answered it I told them the problem she said I must get my supervisor who said Next year isn’t far away. To which I said well the nodule may be cancerous she then said we’ll ring back on Tuesday to speak to the secretary. !!!!!!

[SheffieldJane]

I am speechless at the way you are being treated. I think that it is formal complaint time. These people are dangerously incompetent. I would have to Google the process or talk to Citizens Advice. No wonder you are feeling helpless/hopeless. X

[Wonderfullifeandmore in reply to SheffieldJane]

Thank you, I was beginning to think it was just me. I am going to ask to speak to the practice manager.

[Wonderfullifeandmore in reply to SheffieldJane]

Hi just an update, tried to ring my GP practice today for test results, there is a separate line for test results. I let it ring for at least 20mins and I was number 1 in the queue then I gave up and rang the appointment line again it rang for ages then when somebody answered they had no results, said try later in the week or next week. I rang the ultrasound dept at Hosp the results were sent to the GP on the 1st September. I was livid, went to the surgery and really went into one, they still maintain they haven’t got the results so I said well they are resending them today. I am sick and tired of the way they are treating me, I said yes I may ring a lot but my Illnesses are real unfortunately. I may suffer from anxiety and depression but I’m no stupid so don’t treat me as if I am. At least I got it off my chest. Let’s see if it makes any difference.