Newbie and such a relief

[Sasha-pi]

I am a newbie to the group and it is so fantastic to read that other people are experiencing the same condition and symptons.

I am diagnosed in 2003 when when I lived in South Africa. Since then moved to Dubai and now resident in the uk for 10 years. I am so used with living with the pain, ulcers, fatique. Every time I visit the doctor being told nothing is wrong.

I have an appointment with Osteoporosis/ Rheumatologist end of the month. Hopefully we can start treating the flare ups.

I currently have excruciating pain in my hips and extreem tenderness. Can’t touch my hips or stand against anything. Thought it might be Osteoporsis, but as usual, all blood tests comes back clear.

Hopefully when I see the specialist end of this month, we can start treatment properly.

My eyes are also very tender, the muscles are inflamed, the optometrist gave me some steroids drops to help relieve the pain.

[GlastoGal]

Hi Sasha-pi

I had continuous hip pain for a couple of years, causing severe burning pain and stiffness. I was diagnosed with ‘bursitis’, an inflammation which was treated with steroid injections. Thankfully I had no further trouble after 3 injections over the course of a year. I. Evans active with Bechets last May and commenced oral steroids and apart from one night of hip pain during a period of stress and a flare up I’ve had no further hip pain. Might be worth checking out bursitis?

Regards, GG

[gillianTS in reply to GlastoGal]

I have hip pain, well it is actually pelvis pain on the tops of my pelvis where you might put your hands on your hips, it has been a recurring problem and had no help whatsoever from rheumatologists or GP's, I was told by a chiropractor a couple of years ago who used to give me soft tissue massage that my pelvis was twisted, mentioned it to rheumatologist and GP but no reaction, amazing. The only help came from physiotherapist who gave me some exercises which help a little but the pain never fully goes away.

Occasionally I have slight bursitis especially when someone, consultant, decides to prod there.

I hope you can find some answers I would be interested in knowing what has been suggested. Would also be interested what they suggest for your muscle stiffness this is with me daily, especially biceps and calf muscles.

Gillian

[Sasha-pi in reply to gillianTS]

Hi Gillian, thank you for your message.

I agree with no help from GP’s. Been struggling to get past them in UK.

I will explore the physiotherapist idea. Thank you xx

[Sasha-pi in reply to GlastoGal]

Hi GlastoGal, thank you for your message. I had 2 injections in my hips and still received 3 steriods per day to take. If I lower the dosage then the pain returns.

Will have to see what the decision is when I see the UK doctor end of the month. I will make sure I mention bursits.

Xx

[Legomum]

Hi Sasha-pi, welcome to the group! Sorry to hear you have been suffering for so long. I was diagnosed at a similar time to you and receiving care at the London Behçet’s Centre of Excellence. Have you been referred to one of the 3 Centres in the Uk? They have all the different specialists attend one clinic and one of their big successes has been in reducing eye disease in Behçet’s patients. I see an Ophthalmologist at every appointment there. Do hope the team can get on top of your pain, understand the causes and get you on the best treatment.

[Sasha-pi in reply to Legomum]

Thank you Legomum!

We live in the Midlands, I will ask the specialist when I see him/her if they could refer me.

I am most worried about my eyes and it is pleasing to hear the clinic had some success in this area.

Yes the pain management is most important to me. Xx

[Legomum in reply to Sasha-pi]

It is usually inflammation of the small blood vessels which impacts the eyes. They are very precious and need looking after! Here are details of the 3 Centres of Excellence and it is free for your GP or dentist to refer you for specialist care there as it is funded centrally by NHS England for rare diseases: behcets.org.uk

[Legomum in reply to Legomum]

Prof Stanford is an eye doctor who wrote this factsheet about eye problems in Behçet’s patients behcets.org.uk/Documents/we...

[Sasha-pi in reply to Legomum]

Thank you for all the useful information! I really appreciate the details.

[Sasha-pi in reply to Legomum]

Thank you very much Legomum! X