LUpus Patients Understanding and Support

Loosing the will to live!!

Hi i have recently been diagnosed with Hypermobility but I'm suffering every day, in constant pain muscles and joints hurt, chronic fatigue to the point i can't get out of bed, frequent migraines, sensitivity to sunlight etc I've done some research and my symptoms fit those of lupus to a tee and I've found there seems to be an overlap of the two. My doctor won't look at autoimmune as he's satisfied its just hyper mobility. Im consider paying for the tests myself at the lupus centre london. What do people think? could i have lupus in conjunction with hyper mobility or even be mis diagnosed?

4 Replies

Hi i have had an email to say stephanie has responded to my post but when i log on its not showing? Help anybody?


Helen....I would go get tested for lupus. At least you can clear your mind of worry and know. I have been tested positive..I have a terrible time getting out of bed every morning. I don't think it's so much the joint pain, mine is not that's just got some kind of hold on my mind...I was also getting terrible migraines and now take natto k enzyme for sticky blood as two of my brothers have clotting disorder. My migraines have gone away so far. I take the enzyme every 5 to 6 hours. I am allowed to take up to 6 a day According to the company. I also diagnosed myself and made my gp order a blood test. Sometimes you have to be proactive with your health and be a little pushy with the the doctors. I hope u feel better.


Dear Helen,

If you want to see someone who I think is the best lupus specialist, then I would recommend Professor Graham RV Hughes who is at the London Bridge Hospital. I know Dr Hughes, who was head of the Lupus Unit at St Thomas' Hospital, London and has trained most of the lupus doctors in the UK. He has an international reputation.

You can read about him here:

I am concerned about the title of your post which sounds as if you are very depressed, in which case I would urge you to speak to your GP since "loosing the will to live" must be taken very seriously.

With good wishes,



Hi Guys

Thank you for getting back to me with your thoughts. Funnily enough i phoned the london clinic this morning to make an appointment and then thought i would give my G.P one last bash before having to pay. I went this afternoon and saw a different doctor who immediately said 'hmm, have we tested for Lupas?'" She was fantastic and although my routine blood count only showed white blood cell count was high (don't know if thats relevant) but fine otherwise, she is running the ANA and another couple on monday. I feel so much better today, like she listening to me. Ros, i was slightly down but more because i felt i was chasing my tail and getting no where rather then depression but I'm upbeat today and will try to stay that way. Will keep you all updated when the results of my bloods come back. Cheers


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