Continual problems.

[Wrexlu]

After seeing a rheumatologist privately on the 4th October I have continued to have a flare.

All of my joints are in excruciating pain and taking naproxen doesn't help. My eyes are still bothering me too. I have never been in so much pain.

My problem is that I need to be on medication to dampen the symptoms down and currently don't have an appointment on the NHS to see the same rheumatologist.

How can I carry on with this amount of pain without treatment? I am at my wits end as this has been going on since May.

I still can't feel my hands and feet which adds to the worry.

Am so distressed and don't know what to do. This pain is unbearable.

[whisperit]

That sounds terrible, Wrexlu. So what is your current situation regarding clinical support? What was the opinion of the private rheumy you saw - did s/he write an assessment report for you and your GP? Did s/he decline to take you onto their NHS list? What about your GP - presumably they are aware of your problems, and that they are so severe that you've sought a private referral? They should certainly be acting on any advice received from this private assessment. Clearly, in any case, you need to see them to push for more adequate symptom control and a rheumatology referral as soon as possible.

Sending gentle hugs x

[Wrexlu in reply to whisperit]

She sent me and my GP the diagnostic letter and said she would try and put me on her NHS list. This hasn't happened.

Been to see my GP this morning as I was in agonised pain in my right kidney and joints. He was sending a fax to the Consultant to try and get me seen soon.

Feeling quite unwell. Have got yet another infection but he wasn't sure where from. He gave me more antibiotics for the second time in two weeks.

I really hope the Rheumatologist gets in touch and gets me an appointment so I can start on the relevant medication.

Thanks for the gentle hug. Much appreciated. Xx

[whisperit in reply to Wrexlu]

Did the private letter suggest a diagnosis and/or treatment? It's good that your GP has taken action to get you seen. Hopefully s/he will be able to chase this for you, but if you hear nothing from them, you could always ring the rheumatology department yourself to see what the situation is - you could ask have they received the referral/letter from your GP and what the outcome was...

Let's hope it gets sorted very soon x

[Wrexlu in reply to whisperit]

A diagnosis of SLE was made. She said when she next saw me would start me on a low dose immunosupressant. I have phoned the hospital and got nowhere that is why my GP is chasing it for me. Xx

[whisperit in reply to Wrexlu]

I should think so too. A clear diagnosis like that requires you to be under a specialist rheumy right away . Keep going x

[Wrexlu in reply to whisperit]

Thank you. Will try whilst I am suffering. Dreading the night ahead. Xx

[Lily77]

Dear Wrexlu, I found myself in a very similar situation. My private rheumatologist had sent me home from hospital with paracetamol and voltarol. They proved totally inadequate. I suffered an acute pain crisis and had to have ememergency pain relief. It was my local NHS services which came to the rescue. If you are experiencing out of control pain, I would suggest that you need to get emergency help either via your local GP or hospital. I had to move onto to opioids to control the pain. The lovely doctor who rescued me said "my dear lady you do not need to be in this much pain". You really should not have to go through terrible pain either. You write that you are in severe crisis. My thoughts will be with you that you can obtain help today. With gentle hugs, Lily

[KatyM23]

Yes love, you really need clinical/rheumatology support. Your gp seems pro active in contacting the rheumatology dept however keep on thim/her. I agree with 'whisperit' that you could contact the rheumy dept yourself. Phone the consultants secretary and explain the situation to them. Keep on at them. I know it's ridiculous that you have to fight especially when you feel so bad. Hope you get seen soon and your pain is better controlled. Thinking of you love. 💕xxx