Not feeling the best at the moment, having alot of sharp dull aches in my bones very hard to explain the pain. I feel like my rhumy is no longer interested, my GP's dont listen I feel like a complete moaner to my boyfriend and mum that I put into my head no one believes the horrible pain im in because I cant even explain the type of pain im in because its so abnormal.
I was diagnosed in aug 2016 with undifferentiated connective tissue disease which would then eventually turn into lupus and inflammatory arthritis. Since the hydroxychloroquine made me have an allergic reaction and i was developing pain in my bones my rhumy sent me to see a lupus professer who turned me away and said i just have fibromyalgia and I was discharged from Rhumotology!!
I have fought to get back on the books because I know from my bloods, pain and symptoms I have lupus. But trying to get a dr to listen to you is bloody hard!
I have no idea what to do any more, I called my rhumy 3 weeks ago due to complications (weakness and pins an needles in legs) after surgery for something else he has never called me back!!! I feel like im loosing on every hope to getting a proper diagnosis and starting medication. I just want a day without pain, no aches, no pins an needles, no weakness and no sharp pains. I have only turned 22, this has been going on since i was 20 and i cant cope no more...........
Hi Leanne I got diagnosed too last August so know how hard it is getting the help you need!
But get back positive, we've got a diagnosis so now need to fight for the treatment you're entitled to. No it shouldn't be a fight but if you want to get better you need to first realise that you deserve help and have a right to be treated appropriately.
Do what I have and keep on at them. I am fortunate as my GP's and consultants are mainly helpful and sympathetic - if they're not then I won't see them again or ask to see someone else for my next appt.
I think we all have good and bad days so ring up on a good day when you don't feel so down about it all. And if your feeling sick on the day of your appts go show them how sick you are.
I have hassled, cried and begged for help and it seems to work. Although I am just being honest with them as I too have been ready to give up. But then I dig deep and find that strength I need to keep going!
And if your GP's don't help they will when your constantly in there every week! Alternative move to another practice or even the Walk in Centre that's what I've done. Try every avenue to get the help you need don't take no for an answer.
I have finally had a letter to see my rhumy in June, was hoping for an earlier appt as that would be 4 months.... I am going to see my gp in the morning An have a good moan the bone pain seems to be getting worse, I'm sure they will just tell me to wait until I see the rhumy which frustrates me!
Say you've been recommended Gabapentin to take in the meantime until you can see your Rheumy. It's helped me until my hydroxychloroquine kicks in. Hopefully your GP should prescribe this for you to help until your appt x
Tbh hydroxy isn't nice but the best of a bad bunch of meds for Lupus. I think it's a two edge sword between suffering and getting continuously worse from lupus or take the meds and deal with the side effects. I'm now eating healthier cutting out gluten & grains mainly and trying to exercise if and when I can. I understand the key to healing any autoimmune disease is diet so that's the route I'm taking x
I'm so sorry to read your post and hear you are struggling.
You've had a great reply from MissFG. She's right you do have a diagnosis, undifferentiated tissue disease and fibro is a real diagnosis too. Can I ask, are you on any meds? What bloods have you had?
I've recently found out that my diagnosis of SCLE in 2013 was wrong. I've had SLE all along. I've been in Dermatology led care all along. The Rheumy wanted to discharge me many times. She hasn't done basic blood tests, checked my blood pressure at clinic etc etc. I've really had to battle. Even involved my MP and had a meeting with two senior health officers from my health board.
I have certainly found out that unless we fight our own corner, no one else will. It is our lives. We have to try it live it as best we can and don't care what other people think.
So with that in mind, write to your Rheumatology Department and say with your diagnosis you shouldn't be discharged. Complain to PALS, Patient Advice & Liaison Service at your hospital. Complain to you GP surgery practice manager. And if that doesn't work, move surgeries.
I haven't felt believed since 2013 and so I keep a daily health diary in a note book - to use as proof. I photographs my rashes and swellings and butterfly rash etc and her them printed off - again as proof. Can't argue with that kind of evidence.
Don't give up. You will find the energy from somewhere.
Just to add as well, my sister has fibro very bad. Long story short, she is cared for by her GP and sometimes pain management at the hospital and urology for her bladder issues. But fibro patients don't seem to get Rheumy care. I think this is a policy decision more than anything as nearly every Rheumy Department is completed overloaded with work with RA, lupus, MS etc. They basically don't have enough rheumies or time to see fibro as well. My sister has a terrible time and barely gets out of bed. Her little girl is often taken to school or collected by a neighbour etc, as my sister can't. Her pain is severe. She is on 22 tablets a day. I'm not sure whose worse off! She won't die from fibro but her quality of life is very poor. Then there's me with SLE - I have ups and downs but it could kill me - high risk of stroke and kidney involvement etc. Neither are nice.
So, like I said you have two diagnosis, I just think you haven't found the right doctors for you yet. So time to make a fuss. Boxing gloves on. And let me know about your meds and blood test results.
Don't give up. You've had some great advice from MissFG and Wendy. You have been diagnosed: UCTD and Fibro. If you can, research UCTD and Fibro (I know nothing about your conditions to my shame but I do know how pain can control your life. You are ill my darling and need help!), their symptoms, how it is diagnosed and treatments, etc. and if possible, print them off and take with you to GP. Can you take your Mom with you? Just as moral support - we all need a shoulder to lean on! You need to find a rheumy who will listen - I know how hard that is, I'm having a second opinion next week as my first rheumy was terrible!
Keep fighting - I know you feel like the whole world is against you but when you feel like that, come on here and there is always someone who will listen and offer advice. We cannot offer medical help but we can send great big, gentle hugs.
Oh you poor thing. My Rheumy was the same and now months later I have a new GP who is referring me again. Please take whatever painkiller you have that suits you and rest to ease the pains. I don't know where you live but there is the St Thomas's Lupus Clinic - look it up on line and read and then demand a referral from your GP. PROF Davies at Brighton &Sussex Univ Hospital is very good and very sympathetic. I wish I could help more and take your pain away. You are far too young . Let us know how you get on. Cas x
I am sorry to hear you are feeling poorly and are unsatisfied with both your GP and rheumatologist. Have you tried requesting a referral for a second opinion?
It currently takes an average of seven years to diagnose lupus and it is common for a rheumatologist to diagnose a person with fibromyalgia and undifferentiated connective tissue disease during the early stages of lupus. There are a few blood tests that are checked when diagnosing lupus; these tests are discussed in our free information pack which you can download or request here: lupusuk.org.uk/request-info... .
We published a factsheet that contains services and support helplines which may be of interest to you: lupusuk.org.uk/wp-content/u.... We can also provide you with LUPUS UK contacts who you can speak to 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 local contact to speak to, you can email me at chanpreet@lupusuk.org.uk
Wishing you all the best, let us know how you get on.
Hello Leanne21bull. How are you feeling? Have you had any thoughts on how you are going to take things forward? Are you going to see a different GP to ask for further help and explain how you are feeling about things? Please stay in touch. Wendy x
Very nice of you to reach out again. I'm feeling better about it today - I'm going to see my rhumy on 6th June see what he has to say if no luck I will be seeing my gp day after for second opinion - I feel I would rather be diagnosed now then leaving me for years like other people say it's a tissue disease which then turns out to be lupus. X
Good for you. Great action plan. Be proactive. Patients who are proactive have better health outcomes, so I've been told. Let us know how you get on in June. Good luck. x
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lupus mental pain
pins and needles 
How long does a steriod injection last :)
no close to a diagnosis.....
