Help - Advice to speed up first rheumatology appointment

[SJC61]

Hello everyone you are all so knowledgeable and I wonder if you are able to advise me please.

I have been feeling unwell for the past 3 years or so. I've been backwards and forwards to my GP who has diagnosed depression and menopausal symptoms. I did not agree with this. I am 56. I have had recurring anaemia, severe fatigue, pain in numerous parts of my body (until recently I was not focussed on location - just that I hurt and couldn't function at all!) Poor cognitive ability. I have been unable to type, hold a pen, drive, walk far without having chest pain and breathlessness. It has been taking me two hours to get ready for work in the morning due to stiffness and pain in my hands, feet and neck. Some days I am unable to lift my arms to wash or dry my hair (my husband has been doing this for me), I cannot always hold my toothbrush, and make-up is a thing of the past. For the first time in my career I have struggled to keep up with my work (child protection). I have kept my line manager informed during this time, however she was unsympathetic (difficult I guess without a diagnosis from my GP). Because I felt worried that I would make a bad decisions, and I was struggling with my stress of not being able to keep up, I eventually resigned from my job following a difficult conversation with my manager.

I now have a new GP who thinks I may have an autoimmune disease, although there are no markers in my blood other than severe vitamin D deficiency. It appears I had markers for arthritis in a blood test back in 2014 when I was initially diagnosed with anaemia? I now have severe pain in my knuckles on my fingers constantly and two are rotating inwards. My left knee, neck and feet are painful a lot, but stiffness overall is extreme in the mornings and after sitting for too long. I also have muscle pain, crawling skin (like money spiders are in my clothes), and severe burning pain in my scalp - most evenings.

Following a range of tests I have been found to have a congenital heart condition that can result in sudden death on exertion, surgeons are still reviewing whether to leave well alone as I have had no heart problems so far - scary but I am happy with this decision so far.

I was also diagnosed with cervical spondylitis approx. 12 years ago.

I am also referred for an urgent uterine scan as I have started bleeding and have pain after 18 months from my last period.

Sorry for the lengthy post, don't know who to turn to. My GP has now referred me to rheumatology but due to severe staff shortage I have been told I will not have first appointment until end September. I have found alternative hospital trusts who can offer me a two week assessment but my GP has said my local care trust are refusing to allow out of trust referrals. My GP is challenging this but is not confident it will be agreed.

I am now beginning to get depressed and have been prescribed anti-depressants to help my mood and to sleep.

I am trying to keep focussed on my health but I am concerned that I have no income coming in

Any advice please. I am at my wits end and just do not know what to do to get an earlier assessment. I have considered going privately but with no salary coming in I am scared costs will spiral out of control.

[Hidden]

I'm do sorry. What an awful time you are having.

Can your GP not contact rheumatology and tell them it's urgent? My GP had done this in the past and I've been seen quicker.

Awful you should have to wait so long. I know how frustrating that is. I wasn't seen for ages initially.

I do hope things get moving for you soon.

[SJC61 in reply to Hidden]

Hi thanks. Urgent referrals in my area are 10 weeks, although neighbouring trusts are 2 weeks. It seems a crazy system to me given it is a national service? But that is because I am feeling sad and frustrated- all will work out I guess.

[Downtime]

I’m so sorry to hear of your problems. It’s no wonder you’re feeling depressed about it. Is there a chance you could have a private appointment with the rheumatologist? I know most people aren’t in a position to do it but sometimes it’s worth it to get a quick diagnosis and start some treatment if needed. I did this eventually and was diagnosed within a week and put on the usual meds . After that I just went with the normal hospital appointments, it was with the same bloke anyway!

[SJC61 in reply to Downtime]

Hi, thanks for this. When you saw consultant privately did you have to pay for a range of tests before being diagnosed. It is the escalating costs of the tests I am worried about more than consultants fee.