LUPUS UK

Help me please

Hello, I'm Lou, I have been diagnosed with M.E in 2013, but I have such different pain now. My legs burn so much the pain gets unbearable, mostly when I walk ,or stand to long..sitting is now so painful too in my left thigh.my legs feel like there being tickled with pain at night..and my feet ?!..I'm getting headaches, being sick..loosing my balance and my mind I think..can't remember stuff within minutes.. doctors don't seem to care, sorry crying writing this..I'm going under, what do I do please..?

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Oh you poor thing Lou. Have you explained how all this is making you feel to your doctor yet? ME and Fibromyalgia can sometimes actually turn out to be autoimmune diseases such as Rheumatoid Arthritis, Lupus or Sjögren’s or a mixture of these. I personally have Sjögren’s and Hypothyroidism and at various points have had all the symptoms you describe and severe chronic fatigue too as part of the inflammatory process.

So I would urge you to try to be firm with your GP, tell them exactly how this is affecting you now and request antibody tests for autoimmune diseases including thyroid, rheumatic diseases, B12, Vitamin D and full blood count.

Take care and please let us know how you get on with the doctor. 😊

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Good morning, thank you so much for caring enough to get back to me..I've woken up to a swollen right hand, it's the fourth time it's happened, I do have trouble gripping my knife and drop things alot, it's weird..three weeks till I can see my own Doc, so have to see another yet again! My pain killers don't do much, ( morphene, preagabalin ) ..feeling sick at moment, hate this.. anyway IL keep in touch, and I hope your feeling a little better today, bless you..thanks again Hun 😃

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I totally agree with twitchy - I'm very hesitant about the me / fibromyalgia tag as in my experience it is given before extensive testing has been done to rule out other problems. In my own case I was labelled with me for 25 years with no help or support and when I was frog marched to my GP in Oct 16 by my husband as I was so poorly the fibromyalgia diagnosis was rolled out even as the GP wrote the bloods form out! 1 year later a rheumy told me I have ankylosing spondylitis, an auto inflammatory disease that is diagnosed with a blood test, X rays and MRIs. I'd just never had the blood test before that shows the genetic variant that is strongly linked to AS! So, keep on at your GP and demand thorough testing. Good luck!

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Thank you so much for replying it means alot, I've awoken this morning with my right hand swollen to double it's size, this has happened four times now, and I also have trouble gripping my knife, or I drop things alot.. mental !! I rang doctors and can only get in in three weeks to see my doctor, so must see yet another..I don't think morphene is the best thing as along with preagabalin isn't working..fed up, as you must be.hope your feeling not to bad today Hun, and yes IL let you know..thanks again ☺

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I don’t know where you live but I’m amazed you have access to morphine? If you can try and expedite your appointment because morphine will create dependency and isn’t prescribed lightly. You probably need an anti inflammatory instead but I recommend the gels which you can buy over the counter rather than pills and some wrist splints until you can see a doctor.

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Yes twitchy is right - an anti inflammatory may be needed and work better. I am forever dropping things and failing to grasp things properly. I fell over the other day because the cupboard handle fell from my grasp and ended up in a heap after nicely whacking myself on a radiator cover on the way down so I can sympathise 😀 my rheumy doesn't think the hand problems are linked to the AS, but others with it confirm they have the same issues... And yes v annoying when you don't have continuous care from the same Dr - I never see the same one twice so spend precious minutes recapping about my health in every appointment.

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I'm so sorry to hear of your pain and difficulties. It's hard with doctors today. I think they only can do one thing: prescribe meds. I would advise you to look into natural herbs and things to handle inflammation and pain. Turmeric, st johns wort, whatever your symptoms are, there should be a natural remedy. Morphine and other drugs are not really helping, as you say. I'm praying for you.

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Fredabooboo,

I'm sorry you are suffering so badly. You have some great comments and support here.

You say, you cannot see your GP for 3 weeks. With your symptoms, I think you would be better to phone 111, or go to a walk in centre, or A/E. A swollen hand to that degree, does need investigation. Otherwise, you could phone your morphine prescriber, as there is a responsibility to your ongoing care. If you are under the care of the GP, and have difficulty changing your appointment, phone the practice manager. I have done all of the above, at various times, of health service need. You may be surprised that you will be seen sooner.

Please don't sit at home waiting, we are all a number (in some respect), in a health system that is overloaded. We do have to report changing symptoms in our attempt to get care, in a timely manner.

Also, have you thought about putting your feelings and symptoms in a letter for your GP? You have written so well about your symptoms and the effects. Your GP will grasp a better understanding? On reflection, this is something I think I could have done myself, when my previous GP did not realize how poorly I was.

Good luck, let us know how you get on.

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Good morning

.I've just read your comments from 3mths ago I'm sorry I didn't know you'd written this to me..I only came back on site yesterday..I'm trying to help KitKat at moment ..it was my doctor that precribed me morphene..folk seemed surprised buy the fact I was on it ..I have severe back problems so that's where that came in ..I'm on 12hr release and have oramorphe if needed so people stop being alarmed ok.anyway I'd just to thank you about the letter idea..I'm going to do exactly that..I've been diagnosed with severe arthritis and I'm on methotrexate injections.seems ok.not changed things yet and I'm on anti sick tabs..I've just said to KitKat I can't walk well today so I'm going swimming..seems logical haha ..hope your doing ok hun..thanks Lou x

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