I have epilepsy and am on gabapentin and lomotrogine and have to go for annual routine blood tests.

4 yrs ago, after having already suffered really bad facial rashes, i had a positive result to lupus. I saw only 1 specialist about this, who told me i did have Lupus and not to worry as there are things they can do. I wasnt told what it is, nor why i had got it, nor wether they would do something about it.

From that point on i saw a consultant about fibromyalgia and went for the diet and lifestyle chat.

THAT is all that was ever done and i have been left ever since. I have had the classic constant joint/muscle pain, constant tiredness, fits, i was sectioned 3x as i haloucinated .....all the time my plea of ....well, i have Lupus what do you expect...treat me for that...was ignored.

I am sick of the painfull hands and feet and even though you can clearly see my pain, My husband has told the world and his uncle that i am faking it, so all my family and friends think im lazy and good for nothing.

All i take is paracetamol and ibroprufine plus the odd cocodine tablet if i cant stand it any more, and they knock me right out like i have been given a general anasthetic,so i cant take them too often.

I am a horse trainer and riding instructor, so i do what i can,, but i feel i have no-one in life. no-one who understands !!!

8 Replies

  • DAMN! Your husband sounds like a right idiot! And of no support to you whatsoever.

    Am really sorry to read how low you feel bt sadly yohave to be the one that raises your game. I had a similar experience after my diagnosis 12 years ago. And sadly i also had to learn that lesson. I also think you are suffering from deression, and who wouldnt be, so ask your gp, it does make a world of difference if your spirits are lifted.

    ALL the people on this site offer kindness and support so use us to chat to, rant to, compare notes with etc.

    Good Luck x x

    Kind Regards. . . . Mandie

  • Thank you Mandie, I think i just need people to chat with who understand what its like, so thank you for your kind words and advice xx

  • I know that feeling, and all on this site do aswell. So we are all more than happy to listen, chat, compare notes, rant and have a laugh.

    Have a lovely day. . . . Go and enjoy the horses! Having got my own horse i know that just being around them, eases my soul


  • thank you yes....i will go hug a pony lol xx

  • Yes I agree - time to kick and scream and get the attention you deserve from the specialist -and get some treatment!! I've learned to be quite a good moaner and complainer when I talk to doctors so that they understand my pain!! That's what they are there for, and they can help you.

    Also, I found that when the specialist took my symptoms seriously, I felt more confident to talk to my husband and then he took the disease seriously. Before diagnosis he thought I was making a bit of a fuss about nothing (and my mum did too!) but that has now changed thank goodness and they are supportive.

    It sounds like you have found work that satisfies your soul. Follow your joy xx

  • Omg. Can not believe the way you have been treated by the doctors, family and friends. I agree with the above. Go and give them what for and make a stand. Tell them you want something done with your medication and don't be afraid to ask for help. I'm feeling low at the moment too and going through a lot so I know how you feel. Chin up. Hope you feel better soon x

  • All too familiar to me with the husband thing. I'm so sorry to say this, and there is not one part of me that is telling you what to do... anyways, the best thing I have ever done and have never looked back on and regretted was separating from my husband. It has been 2 1/2 years now. I will be divorced soon. It has lifted tremendous stress from my life.. I no longer feel guilty for napping and feeling bad and doing what my body needs me to do. I couldn't vent or complain to him, I felt lazy, no empathy was given to me by him. I have always had to do everything around the house and take care of our child anyways so nothing has really changed! I am lucky that I can still afford my house without him. But I am absolutely flabbergasted at how much better my life has gotten without him!!!

    I'm so sorry to hear all your pain. You are worthy!!!

  • Hi

    I am sorry that you are experiencing this and with no support from your Husband.Now you need the support from Lupus U/K ring or e-mail and ask for leaflets,and the have a very good DVD for both of you to listen to I think that is £2 but not sure.

    read and listen these together,and if he still treats you that way afte,r tell him to bugger off (sorry but had to say that)

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