Don't know where to turn.

[cliffhopper]

Apologies for the long post, but I'm so down at the moment, that I really don't know what to do next.

I developed excrutiating joint pains in May 2015, was seen by my GP who referred me urgently to rheumatology. They were initially helpful, assuming it was RA, but when my bloods were negative did nothing. I eventually had MRI of my wrists which showed patchy bone oedema, but this was dismissed. I saw another rheumatologist in March 2016, who was convinced that I had Lupus, again the bloods were negative, but I was given Hydroxychloroquine. Initially this was helpful, but after about 9 months it was starting not to work as well. My rheumi wasn't keen to increase the dose and gave me another appointment in 12 months (June 2018). Since then I am having difficulty walking to the pain in my feet, hips, ankles and SI joints, I struggle to write etc due to the pain in my shoulders, hands and wrists, I have bald patches, and my eyes have now been damaged by my lack of tears. My Occupational Health Department and my GP have contacted my rheumi asking her to see me before June, but no joy. My GP won't give me stronger pain killers, and although I am very steroid responsive, my GP doesn't like giving them. I now have no social life because of the pain and overwhelming tiredness, and am only staying in work because I have changed my job. I really don't know what to do, there seems to be no end in sight, and I don't hold out any hope that things will change when I see my rheumi in June. It seems that because I don't fit into a nice neat category that I don't get any help.

Sorry again for the long post.

[Chanpreet_Walia LUPUS UK]

Hi Cliffhopper,

I am sorry to hear that you are experiencing a lot of pain at the moment. Joint/muscle aches and pains are one of the most common symptoms associated with lupus; around 90% to 95% of patients with lupus will experience this symptom. We published a blog article on pain management which I hope you will find useful: lupusuk.org.uk/pain-managem...

You may be able to get an earlier appointment with your rheumatologist if you contact the secretary regularly for cancellations. Also if you are finding it difficult to wait until June, you can contact your GP to see if you can be referred elsewhere with a shorter waiting list.

Hair can become thin and patchy when lupus is active; it is usually regrows when the disease is brought under control. You read more about this in our ‘LUPUS: The Skin and Hair’ factsheet: lupusuk.org.uk/wp-content/u...

The eyes can be affected in people who have lupus; around one third of people with lupus have some sort of eye-related matter such as ‘dry eyes’. To read our factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ click here: lupusuk.org.uk/wp-content/u...

Here is the link to our blog article on ‘managing fatigue’ which I hope you find helpful: lupusuk.org.uk/managing-fat...

If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at [e-mail] with your name and address . Also, I encourage you to keep using this sociable forum as it is a great way to stay connected with others.

Have you read our blog article on ‘getting a diagnosis of lupus’? The article discusses the specific tests and criteria that are needed in order to make a diagnosis of lupus - lupusuk.org.uk/getting-diag...

Please keep us updated, wishing you all the best.

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Hi Cliffhopper. What a dire situation you have been put in by Rheumatology. I too have been in similar situation when my bloods were negative, having previously been diagnosed with seronegative RA. I relocated a couple of times and finally - once off all meds and steroids - my ANA and IgG showed positive and I had a lip biopsy which showed 100% positive for Sjögren’s.

Sjögren’s can cause very similar pain to RA and also can cause hair loss as well as very dry eyes and huge fatigue. I certainly couldn’t work in a regular job now. Unlike Lupus about 30% of sufferers are seronegative - which means only a lip biopsy can diagnose definitively. The main treatments are topical and Hydroxy - but Methotrexate can be very effective too.

At least with a firm diagnosis they will have to take your symptoms more seriously - although in some areas they can be very hands off with both Lupus and Sjögren’s unless it’s affecting your organs. And really how can they know that it isn’t unless you’re monitored regularly? A year is too long for review though - it really should be six monthly.

Could your GP advise you on whom to contact to complain about lack of Rheumatology input perhaps? I do hope things resolve soon - it’s awful to be in so much pain I know. X

[leslieliesel]

I am so sorry Xx

[cliffhopper]

Thanks for your replies, it's so easy to lose your way in all of this when I don't have answers. Your support is much appreciated.