Diagnosis Nightmare

anneka87

I'm having a bit of a nightmare trying to get answers. Symptoms started about 16 months ago with pain, soreness and redness in my index and middle knuckles in my right hand. I then developed swelling around the mid knuckle. The pain became excruciating. I also start to have (to a lesser extent) the same issue in my left hand. Then pain in my feet and my right hip. I also suffered horrendous fatigue. I ended up off work for a total of 6 months. Doing anything with my hands and walking was so painful. The GP had no answers and was happy to keep prescribing painkillers but had no explanation as to what the cause was. I insisted on a referral to rheumatology. When I eventually got an appointment there had been some improvement in my symptoms. The consultant was quite dismissive. But blood tests were normal as was an ultra sound of both hands. I was discharged with a diagnosis of fibromyalgia.

Over the autumn and winter symptoms were not as bad. Still sore and the fatigue remained. However everything flared up again this spring time. Again my right hand was the worse effected, but now having pain across my lower back too. I saw my GP for more pregabalin and he told me that the swelling in my hand is not fibromyalgia. He photographed my hand and sent the pictures to rheumatology for advice. They arranged another appointment. They ordered further investigations including blood test and another ultrasound. I've been for the ultrasound today and the joints are normal. Although I continue to experience pain and the joints appear visibly swollen. I assume I'll just be discharged from rheumatology again.

I just feel so hopeless. No one has answers, there's no treatment and I'm sick of living with pain and fatigue. My life has changed dramatically despite all investigations being normal. I'm beginning to think it's all in my head and I'm going crazy.

I'm sorry for the long post but just wondering if anyone else had similar experience? Or if anyone has any advice?

Thanks in advance 😊

PJoanne

Dear @anneka87

Hi, you are not going crazy and it's not all in your head! I have had all kinds of tests (having to really push for them) and they keep coming back within normal ranges despite my symptoms. It's such a slog having to keep pressing for answers! I am also living with pain and fatigue so get what you are saying.

I would recommend a strong program of self care for yourself, good nutrition and exercise, breathing exercises and meditation and finding some hobbies to distract yourself when the pain is bad (I do jigsaws) and some hobbies that bring you joy when you are more mobile.

I hope that your GP can get to the bottom of this for you.

All the best Joanne

Moira

Hi,

I had a similar experience but because I also had recognised osteoarthritis the GP kept flagging that up. I actually went private tp see a Rhumatologist - who was very nice and understanding and diagnosed me with Fybo.

It isn't easy and is painful. Look on the Versus Arthritis site about Fybo as it is very helpful. It's a case of pacing youself. I keep a diary and set myself very simple goals for each day - doing some home physio (veru helpful), dusting, clean the kitchen etc. But only a couple of goals each day. I then can tick them and feel good about myself. But you will have bad days. It's the nature of Fybo. You ustn't push yourself too far though.

I also do mindfulness at home and go twice a week to Tai Chi (Sibashi 1 and also 2)

Hope that is some help.