Lupus or me going mad??

Hi everyone,

I am knew to this!

I haven't been diagnosed yet just going through the tests, it's been 10months now and all blood tests etc have pointed to SLE. I am just waiting on the rheumatologist who has a horrendous waiting time!

My symptoms started with what they thought was frozen shoulder 6months after the birth of my daughter 3yrs ago, this happened every six months then I got a steroid injection and it went for a bit! Then it came in both shoulder at the same time and I literally couldn't move so my doc did some tests and so the process began.

Since then my joint paint has went to my knees fingers and my toes are horrendous I literally can cry at the pain in my toes!

Now I don't know if this is lupus related but I feel my general health is a nightmare, my periods are irregular and some months non existent which is why I can't conceive a second child.

My skin is horrible very dull and spotty (used to be so healthy)

I have 'pee problems'

Feel EXHAUSTED literally exhausted most of the time.

I can get anxious and quite down which is just not me!

My eyesight is fine yet I sometimes see double and things can often be blurry and I literally can't walk out the door without sunglasses as even a slight bit of sun is sore to my eyes!

Now my symptoms come and go as does the joint pain and I can go for ages with no pain then bang it's back and worse.

Does this sound like anyone or am I going mad??


10 Replies

  • No your not going mad I have been recently diagnosed with Lupus SLE and Hughes which caused a blood clot. I have bladder issues, bowel issues and lots of aches and pains in joint . Had tendinitos in my shoulder it crippled me. My hand has damaged arteries and I have major mobility . I have sharp stabbing pains in head. Feel dizzy, sick and faint. I have problems with the big toe nails they have both died and just starting to re grow but one was in terrible pain and was infected. But feet and hands are part of lupus complaint as I understand and have to be carefull with them. I self referred to Podiatry might be able to get feet checked and tell them you are awaiting diagnoses. I always hated the brightness of the sky so have worn sunglasses. Im exhausted all time but also suffer with sleeping so its mad. I get anxious and worried about silly things and kept crying before \i was diagnosed so they put me on low dose of antidepressants. Have you spoke to doctor? If I can help in anyway just shout.

    Andrea x

  • Andrea thank you so much for replying. My doc is actually great but it's the rheumatologist I'm waiting to see and he is horrible :( makes you feel

    Awful and he is the only one so waiting list is horrendous. I've been waiting 7 months so wrote to my MP today.

    You poor thing you must be in agony!

    I went for an allergy test and was told I have a gluten allergy so my doc is doing bloods to see if its ceoliac or just intolerance and was told my thyroids weren't right, seems like a constant mess then I started to feel like a hypochondriac but I've genuinely never been really ill in my life until 3yrs ago and it's slowly got worse and worse!

    Some wks are good and you think ye it's gone but nope just comes back with a new symptom!

    I am so glad the anxious and depressed thing isn't just me!!!

    Feel much better hearing from you so thanks xxx

  • Ye I thought depression was to do with Hysterectomy I had and coz it messes with your hormones. Alot of symptoms to Lupus. The Lupus website can send you a big load of bumph about it all . You just wouldnt believe how it affects you. My Lupus is on over drive and the hughes is not under control and still awaiting other connected diagnosis of arthiritis and possible regular checks on thyroids. Just keep an I on tel tale signs. I was told to go to A & E today if dont get any results coz of pain and other issues in severe pain. But thats my last resort. Gonna try pushing secretaries to push the consultants on. I have a friend who has a son with similar intolerances. Thyroids are a connective disorder to Lupus as your body is attacking your system. Its destroys good and bad cells. It will attack anything that why so many things going on at one time. I a newbie too as diagnosed last week but waited ages. Where do you live hun? I live in Milton Keynes.

    Andrea x

  • Nope, you're not mad - probably just loopy! ;)

    It does very much sound like what I go through, and what I have read from other people, too. Sorry to pry, but can you expand on your "pee problems"? I have a very weak bladder and want to know if anyone else has this.

    Hope you get sorted!

  • Hey Chrissiij I've always been loopy lol I just worried I was now mad too :)

    I literally spend my life peeling! And when I go I can't sometimes get any pee out or I get a wee bit out then ten mins later I need again and can often take 3 attempts to empty my bladder!

    Sometimes also I go to the toilet and feel the pee coming down but it won't come out and I have to leave the toilet with a feeling of pressure down there it's horrible! :(

    Andrea you can probably tell I'm from Scotland now with my use of the word 'wee' lol

  • Hi Samatha817.

    When I was first diagnosed years ago, my aches and pains came and went. Then they came and stayed unfortunately.

    I also have problems with my bladder. I seem to feel like I want to go all the time, and it comes out in dribs and drabs. I now drink decaf, otherwise i'm on the toilet all night.

    I'm not as far as I know i'm not celiac, but I do follow a gluten free diet as it helps with my IBS.

    Once you've seen the rheumatologist and been put on the medication that suits you, you should feel a lot better. Take care.x

  • Hey guy's.

    I got diagnosed with lupus nearly 3 weeks ago now. Took them long enough as I've been in joint pain for 5-6 years. I am still finding out information about it. I am currently taking hydroxychloroquine but ain't seen any side effects as yet. Also are you guys taking any pain relief I am on co-codamol and naproxen also cinnarizine for my vertigo. I suffer with fitique high blood pressure and rash on my face. I would like to ask do lupus cause memory problems as I am always forgetting things. I could have a conversation and a few seconds after I can't remember what was said. I am taking steroid pumps for my asma but they not doing any good could it also effect your lungs. I am 22 and I should not be the way I am . Got no kids but apparently there is complications if I do catch.

    Thanks guys.

  • Hi there My first rheumy was not interested in me as I was not crippled with twisted joints I was fortunate to be told about a certain professor of rheumy and was advised to ask for a referral with him Which made an immense diff to my care So do some research and find who is the best in your area Then ask for a referral you are entitled to it . Even when I was pregnant I refused care unless it was under a certain doc. I stuck to my guns and was seen by the top in Glasgow I was never obnoxious just let them know my concerns and my willingness to change my lifestyle to see results Dont know if this helps but you can always ask Good luck and take care

  • Hi Voutton my rheumo is a horrible man! Who do you see in Glasgow? I'm in Stirling don't know if I will get referred to Glasgow but my rheumo is the only one in forth valley and been quoted Oct for an app???? Wrote to my mP cause I can't wait that long x

  • Thank you for your reply voutton. I am over the docs in the morning to get more information about my symptoms. I will check with him on that. I hope all went well on your pregnancy.

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