Just been to see my GP and he dropped a bombshell!

I have been suffering with my lower back for the last few weeks, it had apparently gone into spasm but yesterday after I decided I felt a better, took myself off into town....within half an hour I was crippled with pains in my hip(actually feels like it's grinding) and in my heels....hobbling about and no sleep, I got into see one of the GP's(not my normal one) and reading through my notes he said that it could be something to do with the mixed connective tissue disease or fibromyalgia you have? Really....when did I get diagnosed with those? Apparently in a letter sent from my rheumy to my GP in January!!!

I know I have LUPUS and originally GP thought it could have been fibro before the blood test... But am I right in thinking mixed connective is RA,sjorgens and lupus,or symptoms of them all? I turned the morphine down, as I had wanted to go back to work on Monday...

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  • Hi, im the same as you I have mixed connective tissue disease with sygeons, fibro mialaga raynaulds lupus, migrains, asthma, hypertension, carpel tunnel, kaphois, and degenetaive disc disease. It has taken 20 years to get a diagnois. I recently complained at pals due to the lack of information I was getting from the hospital ie they found something on my liver and didn't tell me for a couple of months instead sent me for loads of scans. every time I see a new registra I know they haven't read my notes as they look at me and say oh you have lupus now and I say they told me that 2 years ago is it not in the notes. Be strong, my pain is really bad with my cycle of pmt I declined morphine as I take so many other tablets. Good luck

  • Thanks caldecote, they found my lupus after I had been diagnosed with primary Bilary cirrhosis(autoimmune liver disease) I started feeling really tired, aches pains etc... I am now in the position where i am going to have make a choice about going back to work or not?

  • Unfortuanly I had to give up work as the pain was so severe and my hands were not functioning, it got to the stage I was unable to dress myself cut up my dinner and my neck was having daily spasms. Thankfully though I did have critical health insurance which payed off my mortgage so although it was devastating to give up my career at least I did get some help. I didn't get my pension though, or disability allowance due to being able to complete the form a little tip there get some one else to fill it in. Im thinking of re trying to get both sorted out time will tell, idealy I would love to work but im so unreliable with back pain, migraines and hands. I wish you luck!

  • Hi - like everyone I have lupus *plus* . . . but my disabilities started as a result of three car crashes (no, *none* my fault!) which broke my neck (twice) and led to all manner of neck and back problems - and started me down the road to lupus. After years on a right old cocktail of painkillers (pethedine for bad days, diclofenac for better days, Zydol for . . . well, you all know the routine, I'm sure) and with varying success, my GP packed me off to a pain management course. I won't say I went willingly, or that I enjoyed every minute of it (not least because there were a number of sections where I knew considerably more than the medical staff supposedly there to inform and help us - I bet that's familiar to a lot of people on this forum too!) but the one thing I got out of the course which really did change my life was a proper look at my medication, with a view to giving me some sort of quality of life. I was taken off everything else and prescribed slow-release morphine, as well as Celecoxib to deal with the arthritis (and now CTD), quinine to deal with the spasming (now changed to Plaquenil for the lupus) and omeprazole to deal with the reaction of drugs on the stomach, with ami for bad days. It was the best thing that could have happened to me. I was really scared when they said 'morphine', but I had a responsible, sensible GP who talked me through the pros and cons. Cons: I'll always have to take it, it's not always easy on the bowels . . . Pros: it works! Of course I still have more than my fair share of bad days when *nothing* touches the pain, but I now have enough good days to be able to hold down a job (albeit one tailored to my circumstances). I'm told I'm 'addicted' - well, I'm addicted inasmuch as if I don't take it, I hurt like ****. But here's the thing: I don't get 'cravings'. Sometimes circumstances mean my dose it late - like when I'm travelling and occasionally I end up going a day without. All that happens to me is that I hurt. I've never got 'high' on it. And probably the most telling: I'm on a high dose - but it hasn't changed in *years* - in fact, my current doctor prescribes in three different pill strengths so that on good days I can and do take less.

    So what I'm saying is: don't dismiss morphine out of hand. Of course it doesn't work for everyone, but there's a reason it's the gold standard of pain relief. Sounds to me like you could really benefit from a pain management course - just make sure it's one that includes a long, hard look at what you're taking and why. Good luck! Jo

  • After the day I've had Jo, I maybe back banging on the GP's door 8am Monday morning! I've been in the same place with tramadol....and thought I don't really want to become dependant on something else, but today I have been in sheer agony so much so that my return to work on Monday doesn't look likely....

    It's strange how all of a sudden Lupus or any other autoimmune disease takes hold of your body! Last summer I developed very bad vitiligo, my hypothyroidism as gone to pot, I developed PBC (autoimmune liver disease) and I'm coeliac....then now I've learnt it's mixed connective tissue...I really do believe the stress from my job had a lot to do with and maybe the worry of going back caused this flare up?? He did mention pain management clinic, and I go to these new spinal clinics for physio. I just want quality of life as you say to enjoy the good days and help to cope with the bad days . Thank you for your words of wisdom xxx

  • Ah, Tramadol - really hated that one! I've always wondered why so few GPs realise that if they actually *listened* to patients like us and at least tried to provide proper care and support instead of dismissing us or fobbing us off all the time we'd be spending far less time in their surgery seeking for answers! I was enormously lucky to have a brilliant GP for 10 years. In fact don't tell anyone but for 6 years we both kept up the fiction that I was 'visiting my father' in London so I could still see him - 60 miles away from where I then lived! - because I couldn't bear the thought of trying to find another GP as good as him. When he retired my lack of faith was borne out and it's taken a good 5-6 years to find someone who's half as good. (I did not want 'You're so brave'; I wanted, 'let's try this'.) Back to you: yes, stress has an enormous effect on auto-immune conditions. I don't know what your job is, but I doubt you have the luxury of being able to just jack it in because it's damaging your health (how many of us have been in that position, I wonder?) - but perhaps it's possible to look around for a new job? Hard, especially these days, I know . . . but if you're getting to the stage where you dread going in, you will have to change something. I didn't *want* counselling - as I told the counsellor when I gave up and accepted counselling: I *know* why I'm depressed: I have an incurable disease that's incredibly painful and a job I hate. But I was surprised to find that just talking about my problems to someone with no agenda *did* help me to come to terms with things, and once I'd stopped thinking 'I can't' and started thinking 'what if I did this instead' I did manage to make some changes that helped a lot. You might start there. And as I said, the pain management course really helped a lot too. This forum helps as well: there are so many of you who are so much worse off than me that it makes me almost embarrassed whenever I feel like complaining! Anyway, if you are banging on your doctor's door at 8am tomorrow morning I'm there with you in spirit! A lot of people keep diaries or lists of symptoms; might be good for you to start that too. Be calm and firm and know that we're all rooting for you to get answers! Jo xxx

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