Hello everyone.I'm new to this but want to just start by saying "hi".
I am currently awaiting an appointment at a Lupus and vasculitis centre after reaching the end of a long rough road with health, and going done hill in the past year.
I wish everyone a good health day!
Good luck with you appointment. I hope something positive come out of it for you.
Which Lupus and Vasculitis clinic is your appointment? Do you know how long you will have to wait? Sorry to hear you have been so poorly this last year..
So many questions...
Hi Suzy,thanks for asking.
I've slowly got much worse over many years.My fibromyalgia DX has been awful for pain and fatigue,with other none diagnosed symptoms.
Last year I had a rapid decline and no doctor or specialist having answers.I always used a stick due to weakness and heavy legs standing and walking,but in October developed tendonitis in my left ankle over night for no reason.
This then turned into all manner of sensations and pain in my feet which is constant agony and hasn't stopped.I can now hardly walk and need two crutches, my left foot will barely move.
All my other symptoms have got worse too, and I am now Ill most of the time or else battling with symptoms of some degree every day, and so illness has all but taken over now.
My own hospital rhumie couldn't be bothered to look into it and in desperation I sought advice at vasculitis UK,and got my doctor to refer me to Manchester Royal.
My appointment is due in a few weeks,I've waited just over 2 months.Fingers crossed.
Sincere good wishes x
Welcome to the site but sorry you have to be here. Good luck with your appt.
Hi to you all and thanks so much for the welcome.
Greetings. I would be interested to know how he diagnoses his patient. He is an immunologist. Just curious. I was told he's good. I was previously suggested to see him but didn't as my symptom morphed into rapid arthritic symptom roughly since around January and that's probably not his cup of tea. Are you on any treatment at all? Your "fibro" sounds dreadful.. :-(. Good luck! 🍀
Hi Coniston. I've been on gabapentin for a number of years which has helped with neuralgia and sleep, and taken co-dydramol on occassion.But since October I'm on new pain meds with the feet pain and burning-tingling-'weirdness', and I've been counting down to my next allowed co-codamol and naproxen.Still also on gabapentin.
I'm sorry I'm not familiar with rapid artritic syndrome, but I hope you are getting good care and treatment.Best wishes.
Ah, so kind, thank you. Yes, I am under very helpful specialists and am on treatments. Sounds really dreadful to be in constant pain. I sincerely hope that the immunologist is going to help you as his reputation goes. All my Best, 
I'm glad to hear you are receiving good care.
I am to see a rheumatologist at the Manchester royal,not Prof Bruce as I am unable to attend his only morning clinic (due to travelling distance) and even then there were no guarantees I would see him and not a member of the team.I am assured the rheumatologist I have the appointment with is also a 'big gun' and so I have hope in my heart..as we all do. Best wishes.
Hi everyone just a quick question. My partner has all the symptoms of fibromyalgia but all his blood tests have come back normal is there a possibility he still has it?
Thank you
Hi Jules.I'm sorry to hear your husband isn't well.
Fibromyalgia is an awful condition,I've been living with mine for approx 10 years or more.There are no blood tests to confirm a fibro diagnosis,it is a process of elimination, all tests are normal but thyroid can be affected in time.There is a 'pressing' on various points on the body to test the pain marker points which a rheumatologist will look for,along with taking into account fatigue and various symptoms.
It can affect people differently,it can be mild for some or severe for others.I have various symptoms of fibro all of the time,including pain, fatigue, brain fog, sensitivities to sound etc.
I can feel it flaring up and getting worse which starts with nagging pain in my scapula, I become ill all over and have to lie in a dark room which can last hours or days.
Not all doctors are understanding of fibro and it can be ignored, so you need a helpful, knowledgeable GP. There are rheumatologists who specialise in fibro,one being Dr Yee Ho Chiu
who I saw at Arrowe Park hospital Merseyside under the choose and book referral scheme.There are some official websites with info about fibro (ignore the sites saying it isn't a real illness,they're behind the times).Fibro also resembles ME (myalgic encephalitis) which my son has, and it is similar in many ways especially in relation to fatigue.
If you have any questions, please don't hesitate to ask and I'll try my best to help.
Best wishes to you both.
Thanks Tillyray, my partner has cerebellum ataxia and is undergoing tests at the mo to find out which form of ataxia he has they thought it may be friedrichs ataxia but they've decided it's not that one,
He has fatigue a lot due to his condition but his pain is getting so much worse at the mo he is on naproxen twice daily and gabapentin 900 three times a day and morphine when that all don't work, I was convinced he had fibromyalgia as he has all the symptoms but the doctor ordered some blood tests to test for it and all come back normal so we don't know what to do now, last night he was in so much pain he was in tears and saying he couldn't take anymore, we have an appointment in May I think it is at Addenbrookes with an ataxia specialist hopefully she can answer a lot of questions but at the moment we're stuck and he's in so much pain and we don't know where to turn next.
I'm so sorry to hear your partner is having such a terrible time and in so much pain.I can relate to the pain myself at the moment and with nothing helping to relieve it,I know exactly how he is feeling.
It is difficult when illness' overlap as they can have the same symptoms, making it hard to pinpoint which or what it is that is causing the particular symptoms.
There is no cure for fibro(as with many unexplained illness') and acase of finding pain relief,but at worse times (such as this) I have found nothing to help, and hope now that my additional unexplained symptoms can be answered at my vasculitis\lupus appointment.
I hope your partner can get answers and help at his appointment.I know it's so hard not knowing what to do and feeling you've just beenleft,and it must all be very upsetting for you. Keep going and pushing for answers until you feel satisfied with the help you're both getting and don't be fobbed off. You'll feel peace of mind when you have answers(I know I will) and you will both get through it.
Sincere best wishes to you both x
Hi Tillyrae, I too suffer with vasculitis and was diagnosed last July, I am currently under the mri and jus to let you know it is an excellent hospital, I could not complain about the treatment I received it has been first class and still is, I really hope you get to the bottom of your illness. Much love Elle
Hi Frankie.Thank you for assuring me about the Manchester Royal,that really helps.Best wishes.
Sorry to hear about your ill health. I had tendonitis in both feet and severe pain. I went to see a podiatrist. He made me surgical insoles & I have never had tendonitis since. They also cured my intense neck, hip and knee pain which he said was coming from all the problens I had in my feet. I thought it was miraculous as I couldn't do very much, the pain in my neck was horrendous. I hope you soon feel much better.
Hi Mgtrob. I'm glad to know you got help to relieve you of pain from tendonitis and that the help cured your other pain as well, wow that's great to hear! My tendonitis unusually came on suddenly,but it has evolved into something else since then, I.e very painful, sore, weird sensations in both feet,which I'll be relieved to see an end to.
Here's hoping!
Best wishes.
Glenys, were you diagnosed at MRI? Wow.
Consisting 11 I was diagnosed at the mri in August 2015 they are marvellous and on the ball and nothing is too much trouble for them I have wagners vasculitis hope you feeling ok
Fabulous Thank you. Hope you are doing well.
Dear Tillyray,
I can't really add much, to what has been said above, other than....Welcome to our group! Well no one else mentioned it, did they?
Sorry to hear that you are having a 'rough time' Tilly. I know that we all wish you well.
Happy Easter.
AndrewT
I'm ill and can't get benefits
I'm new and looking for advice
Hi everyone I'm new here I need your help
Happy New Year!
