Lupus Like Syndrome?

Hi there,

ive not been well for 6 years, all the usual Lupus symptoms, my rheumy says (in my last letter) i have Lupus Like Syndrome, i missed my last appointment as i was exhausted and in too much pain to do the 6 hour round journey.

The last two weeks i have had trouble with my jaw, whenever i try to eat i get a shocking pain that last for 3 hours and end up with a milkshake, it even hurts to talk, also i have 3 boils in my groin area that are very painful, i was wondering if anyone else get these symptoms?

Its been a bad day for me, having trouble walking but managed to get 3 loads of washing done, i made the mistake of going in the garden to peg it out, i was only out there for 5 minutes in the sun and ended up with a bumpy red face hot and cold sweats, raynauds in my hand, i just collapsed on my bed as if someone had removed my batteries.

Im getting really fed up of the useless monster ive turned into, i get big lumps on my lips that split and scar, there are days when the staircase seems impossible, im always covered in bruises where i fall over all the time, oh to be 'normal' again! i cant look in the mirror any more, its just too depressing to see my fat red faced crusty lipped image staring back at me, lol

well, if i don't laugh ill end up crying and if i do that it could last for hours.

and now its time for bed and im wide awake!

maybe tomorrow will be better, here;s hoping.

5 Replies

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  • I feel so sorry for you, it makes my problems minor, I dislocated my elbow, damaged ligaments in my shoulder and then to crown it all fractured my right foot and damaged ligaments in heel. Non weight bearing for 6 weeks. This weekend I have had a stomach flare and have been really tired, I recognise the signs and know I just have to lay down and sleep. Thank goodness my hubby understands. No wonder you are fed up bless you, have you got all the necessary aids and adaptations in your home, to help you ?

  • Hi Kazzz, sorry your having a rubbish time right now :( yes I get the horrible boils, I also have started getting them on my face and chest, they are horrible. I also have the jaw pain it seems to last for a few weeks with different severities, at the moment that has gone so sshhhhh I am saying that really quietly, cos I really don't want it back. Yes after I have done my weight lifting of the wet washing up the steps to the line, I want to cry, and I have to have the line really low or I can't get the washing on it. Then my hands kick off cos of the cold and also my toes, cos I have garden shoes that I put on to do the washing which are freezing cos they are outside!!! I have sat in the garden today for an hour, had cream on my face but not on arms etc I am waiting to see if there is any reaction!!!!! apart from the headache with the sun, but obviously had me glasses on but really couldn't be bothered to go upstairs and find a sun hat! So hunny, I no it's crap, but at least your not on your own, we can share our crap!!!! Can't you get a closer appt so you don't have to do all that travelling! Good luck and hope your feeling better soon :)

  • I am so sorry that you are having a bad time at the moment. I really hope it improves for you. Having been a lupus sufferer since 1999, I can empathize with all the ups and downs that it presents.

    Please try and stay positive, I realise thats easy to say..... I find buying cheap plates from the chariety shops and having a smashing session in my back garden helps LOL.. I do alot of meditation and relaxation to classical music. I listening to my body and try tnot to get to frustrated when I cant get out of bed. My dog and daughter are wonderful and give me the strength to keep going. My job also gives me something to aim for.

    I do get mouth ulers and coldsores very often and find cordasyl very effective together with warm salt water as I sometimes am unable to clean my teeth. I do also get pain in my teeth and jaw, a bit like a cracking sensation, but have no idea when it will occur but its painful, a little like lockjaw.

    every patient is unique, treat each symptom as an idividual but take notice of your body as a whole. Look at the whole picture and try to make you life as easy as possible....

    I am sending loads of love hugs and smiley faces to get you through the next few days.

    Kind regards

    Mandy

  • Ok Kazzz I feel so sorry for you. But 6 years is a long time and you should be getting more support. Have you tried changing your specialist? I have found that my current rheumy is hopeless and just stares at me so I decided to contact my local lupus UK group and try and get a recommendation. I am now waiting for an appt from someone who specialises in Lupus. You can feel so alone and I really know what you're going through. Please message me if you need to hun and I hope you get some more support soon.

  • ohhhh thank you so much everyone, xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

    its hard to explain to family how you feel, because one day i feel almost normal then the next day im in bed with the curtains closed not being able to move.

    The first two years my Doctor was treating me with depression lol i kept telling him i wasnt depressed and that i couldnt get out of bed because of pain in my joints and muscles, and tingling numb hands and feet, i begged for and MRI and eventually got one which showed a hole in the top of my spinal cord, he did apologise and then i waited 18 months for an appointment with a Neurologist and another year before getting to see a rheumy!

    I saw my Neurologist yesterday and i have a diagnosis of seronegative lupus, she is also changing my Rheumy so its closer for me to travel (thank the lord!)

    My little task for today is planting up some strawberry plugs, but the sun is particularly vicious today, 5 minutes and i have a rash already lol

    but i will get it done.

    Dorrie, sorry to hear about your problems, its bad enough just feeling rotten all the time without all what your going through, x yes i have rails and all sorts to make life a bit easier, ive been approved for a walk in shower as i cant get in and out of the bath, last time i tried i slipped and done the splits and i was wedged in the bath in a hurdling position lol god it was painful, my two daughters managed to get me out and we did have a good laugh about it, but i had a hamstring injury, my legs never been the same since.

    pollyanna, i hear you, ive only had the boils in my groin so far, they must be a nightmare on you face and chest, x oh the jaw pain is excruciating, i just had a meal replacement drink this morning so i dont set it off, i laughed at your statement of 'sharing the crap' it does help, i hope you feel ok and have a nice day, its so nice to feel the sun on your skin until the rash starts, mine is a bit like chilblains.

    amandalilly, i love the idea of smashing plates, lol i always have my ipod close, i get tinnitus constantly and find the relaxation and Hollo sync stuff really helps by blocking out the screeching in my ears, i have 2 dogs and 2 cats that i couldnt live without, animals seem to sense when your low and snuggle up for a cuddle.

    I set myself a little task every day, today its strawberry planting and i always do my physio exercises twice a day.

    I use cordasyl too, i swear by it.

    LupieLoo, yep, 6 years is a long time but at last im getting somewhere, i feel quite bright today, just the usual everyday pain today with no extra's lol

    i will look into seeing if i have a local group, i never thought of that before, just having people to talk to who understand is very uplifting, thank you, x

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