Am I going Mad??

I have been going back and forth to the doctors for over 3 years with Joint pain.

It started in my elbows, and he treated me for tennis elbow for 2 years.

Since then during the last year, I have had aches and pains that are so bad it hurts just to get out of the chair. My sister told me 5 years ago that she had lupus and that I should get tested for it, I took no notice of it.

The doctors now say I have osteo arthritus in my neck, shoulders, feet, hands etc

I went for a general blood test the other day and my white cell count came back so high the doctor rang me and said she wanted me to go for more blood tests, especially one for SLE.

I feel so tired and worn out all the time, and ache mainly in my hands, fingers and feet.

My work is deterioting, and so is my general demenour. I feel so low and worn out all the time. I remember when I was around about 20ish I felt like this, and kept thinking, if I die, at least I wouldn't be in pain and I could sleep. So I wonder if that was a flare like possible this is now... it lasted for a good couple of years back then, but seemed to go away.

Now I feel like that again, but worse. I am 45 now and feel like I am 90... I have trouble getting about and am taking so much time off work I will end up getting the sack.

I wonder if I have got Lupus? I don't have a rash on my face, but when I am out in the sun, I get a terrible rash on my feet. I have blood spots on my arms and chest, my hair is falling out (has been for ages) and I get mouth ulcers regular.

I am going back to the doctor on Wednesday next week for the results. I am going to fight my corner now.. I have sat back and been fobbed off long enough.

Does Lupus affect your balance and memory?? as I keep walking into things and can't remember what people have told me.

Does this sound like I have Lupus... or am I going mad??

Thank you all for listening

Sue x

14 Replies

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  • Get in touch with me my lovely you sound 100% a lupus sufferer! you have all the symptons plus your pain in your elbows is called fibromayalgia xx

  • It does sound an awful lot like lupus but until you get your test results, its difficult to say. When i first came down with joint pains, almost overnight, the doctor said osteoarthritis. I pointed out to her that my sister had had lupus, and my mother had ra. She sent my blood off to the Hostpital to be tested for lupus and ra. Six months later i had to have another blood test, and i was told i might have lupus, i was referred to a rheumatologist. Up until that point i was only taking paracetamol for pain.

    You said you felt the same way when you were in your twenties. That also could have been lupus, as lupus can sometimes go into remission. I'm assuming you are not being properly treated for it which is why your feeling so much pain. Please try not worry too much and take care x.

  • Hi, I suffer terrible spells of memory loss and become severely unbalanced. If I am out anywhere this can be quite tricky! I think people think I am drunk!! I usually get a severe headache, swollen gums with leisions at the same time. It has been suggested I have severe migraine? I have DLE but so far have not had a positive test foe SLE. Hope this helps! Good luck.

  • Go girl, all of us here are in your corner willing you on. I'm sure I'm not the only one that can say your story could be mine.......the painful joints treatedby imflamatories for'arthritis from my 20's on, several episodes of tennis elbow, terrible memory, really muddled thinking at times, losing words mid sentence and times when like you I felt so ill falling asleep for good felt like it would be a release........being diagnosed with lupus eighteen months ago (aged62!) was actually a relief! at least I know now I'm not a hypochdriac which is how I often felt going to a GP.

    So to answer your question, yes it sounds like Lupus to me and no you are not going mad!

    All the best, and take your list of symptoms with you !

    Routing for you! Beth. X

  • It certainly does sound like lupus to me - but as Melinda has said, you won't know for sure until you get your test results. Possibly, you won't even know then, as lupus can be very hard to diagnose. But I really sympathise - being in pain and tired all the time is horrid, and whatever you end up being diagnosed with - I hope the treatment they give you helps!

    Take care, and don't give up - there must be something to help your pain and stiffness.

  • Your joint tendon and other problems sound all too familiar, it took me 15 years to get a clear diagnosis. But you do seem to fit the bill.

  • I cannot thank you enough for talking to me. Hubby seems to think it is lupus as I have nearly all the symptoms barring the butterfly rash. It seems sad but i hope she tells me it is because at least I know that there is a reason I feel sooooooo bad. I will come back on.here Wednesday and let you all know what she says, thanks again everyone, nice to know I am not alone x

  • The rash is by no means universal, and we all have out own version of lupus with out own combination of symptoms.

    Any of our symptoms seen in isolation, can be put down to any number of things, -Its only when you put them all together and compare with other sufferers that the pattern appears.

  • Your symptoms are so familiar to us all am sure. Took me 10 very long years to eventually get my diagnosis, sadly by then, damage done and have kidney involvement too.

    Absolutely fight your corner, good for you, and still push for answers even if your blood work is deemed ok. A good Rhuematology consultant will not just rely on your blood work, they will look at your past health history and presentation in front of them. It was a fluke random blood test my GP ordered, anti-cardiolipin, which came back as very high, and again 12 weeks later, that I got sat before a Rhuematologist.

    Your not going mad, cognitive changes, memory loss, fondly referred to by Lupus sufferers as Brain Fog, is very common.

  • Hi Everyone

    I went to the doctors last night but my blood test results were not back.

    I took with me a packet of hair that had fallen out yesterday morning and showed her the amount of hair loss I am experiencing at the moment.

    I also gave her a list of all things that I am feeling now.

    She sent me for loads more blood tests and urine test.

    She is now recommending me to a rheumatologist, so just going to wait now for my appointment.

    She said it sounds like Lupus, but obviously a load more tests need to be carried out to determine whether it is or not.

    I feel absolutely exhuasted today, so hopefully the blood test will show something.

    Thanks for listening everyone

    Sue xxxxxx

  • I suffer from really bad joint pains. Its random...one day I feel absolutely fine and almost overnight I feel im no longer 39 but 90 with severe athritis. Also the areas affected are random. Once day it will be feet, the next neck or knees or arms etc etc. At the moment, for the last 3 months I have been suffering with severe joint pains in my fingers -my hands are swollen all the time but more than anything I have no strength in my hands anymore. I cant hold anything slightly heavy (can barely hold a mug of tea) and even simple things like unscrewing a cap are painful. I also have lost a lot of hair and cant remember what someone has told me a few days ago....

  • Hi all

    Finally got a date for the Rhemy, for the 9th October ...

    This sounds daft, but I have been saving all the hair that I have been losing since last week and I think that by the time my appointment comes around, I will have filled a small food bag.

    Think if the hair loss continues at this rate, I will be bald by xmas :o(

    Had a really bad weekend, really exhausted, aching sooooooooo bad and just really feeling not myself. I am unable to peel vegtables when I am like this as I can't hold them in my hands, I feel so useless :o(

    I really really need some answers. Feeling a bit down today

    Sorry for the Rant :o(

  • Some of the blood results are back and she said I had low thyroid ??? anyone understand this one??

  • Gosh, this is sooo familiar to me .....

    I didn't even know what Lupus was until diagnosis a few months ago and then only because I had been referred to Rheumatologist to query RA the specialist did a routine screen to eliminate lots of things so it turns out I have Lupus, Fibromyalgia and Hypermobility.

    Now everything makes so much sense, I'm 51 and for years have been so unwell, always at the GP knowing everyone thought I was a hypochondriac. Along the way I have had 1 pelvic osteotomy, 2 hip replacements, 3 skin grafts, leg ulcer, lymphedema and vertigo not to mention the multiple random rashes aches and pains .

    Even now after diagnosis I know people think I am making up my ailments because it's something you can't see and it is very random, every morning I wake up wondering what aches and pains I will have it's like a lottery :-(

    But there is light at the end of the tunnel as now I have a diagnosis and hopefully medication will help, I know there is no miracle cure but means you're not insane.

    I hope you get answers soon xx

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