Have I got lupus? in limbo and fed up :(

This is my first time on here, I stumbled across this site whilst desperately looking for an answer to what is wrong with me. For the last year I have been suffering with very achy muscles and limbs, especially my arms, but this affects arms, legs, jaw, cheeks, hands, feet, well pretty much my whole body. I am constantly tired, have no motivation or concentration, I get bad headaches, anxiety, constipation, loss of appetite, trouble getting to sleep on a night, sciatica, have had 2 water infections and a kidney infection this year, always catching bugs, reoccuring swollen glands in my neck, generally feeling unwell, recently a really stiff sore neck where my head just feels too heavy to carry anymore, vitaligo, memory loss, brain fog, slurred speech, hair loss (and recently a return of alopecia areta from 3 years ago), sore throats, shortness of breath, mouth ulcers, extreme thirst, heartburn (but this is ongoing from having h.pylori 2 years ago so not sure if connected), backache (also ongoing for many years now) and often i wake up feeling like someone has been playing football with my organs whilst ive been asleep. These symptoms all vary in severity and change on a daily basis. no day is the same. I am 23 and my auntie had lupus (diagnosed at about my age) and her grandmother also had it. I was refered to see a rheumatologist by my gp in march, after blood tests showed a slightly raised anti-dna (i think thats what it's called). But my rheumie said as he couldn't see any of my symptoms it was hard to diagnose me, he also did the blood tests again and they all came back negative (but my sumptoms had eased when he did the bloods, then they flared back up a couple of weeks later). He says he is not ruling lupus out, but thinks my symptoms might be caused from a viral infection and the muscles pain could last up to a year, but I can not remember having a viral infection. Anyway he said he would see me again in 6 months (this was in june) and I was to get the bloods taken at my GP surgery a month before my appointment to see if they had changed. I have my appointment for January but I can not bare to wait this long.

I have been prescribed naproxen for the pain, which made me ill, so they changed them to diclofenac, which did nothing for the pain so I have just started on amitriptyline (20mg before bed) but as of yet this is not reducing the pain (though is helping me get to sleep). I am also taking at leat 4 anadin (muscle and joint pain) a day which sometimes takes the edge off the pain. But I am wary about taking more than 4 as I have been taking them for months and worry about the damage they could be doing to my body. The GP who saw me the other day (who prescribed the amitriptyline) says she will speak to rheumie about maybe bringing the appointment forward.

I've just had enough of it all now, I feel so low and miserable about it. I'm made to feel like a hypocondriac from professionals and it has even made me wonder if is all in my head at times but then i think why would any one want to imagine in their head that they are in pain??

I just feel so lonely and trapped inside this body. I just feel like no one understands, as my pain is invisible. My partner is really supportive but sometimes i just feel like he doesn't believe me about how I am feeling and I feel like all I ever do is complain about how rubbish I feel, but really I don't even mention half of what I am going through, as I am kind of at that point where I just shut and put up with most of it. I just feel let down by medical professionals, would they leave someone with a broken arm without treatment for so long? no, but because you cant see my symptoms it is ok to just leave it? One GP even said to me if I don't get a diagnosis then i will just have to learn to live with it, and that he ahs trouble sleeping but he doesn't come and complain to his doctor about it! I thought to myself no wonder you can't sleep, thats your conscience telling you you are a horrible man!

I apologise for such a long post but I'm totally at a loss. Please can anyone tell me if they think this is lupus? or if it isn't what it could be? can you have negative blood results and still have lupus? Thanks in advance for any replies.

8 Replies

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  • Hello Meg - sounds as though you are going through the mill right now. Lupus can be notoriously hard to diagnose, and although quit a few of your symptoms sound as though they could be Lupus, they might also be other things too, so I wouldn't want to second guess. You do need to be a bit careful with the ibuprofen (your anadin muscle and joint pain) because in the longer term they're bad for your kidneys - but they are generally thought to be safe (I was taking double that dose for far longer - and I have kidney problems now but caused by the lupus and not the ibprofen). Check this with you GP though!

    it's certainly interesting that other members of your family have lupus - but it doesn't necessarily mean that you have it. I had a great Aunt with Rheumatoid, and my sister has sjogrens syndrome and fibromyalgia - but what I have is definitely lupus (according to my antibodies). The main thing is to know you are not a hypochondriac. After all, who would CHOOSE to be ill and to be in pain? - No one! An unsympathetic GP could be a problem, but just try not to see that one again.

    Chin up - and try not to worry (stress won't help at all!) It does sound as though at least one GP is on your side, so why don't you ask her if you can ring up and book a blood test when things are at their worst?

  • Hi, I've not had a diagnosis as yet I'm due to see the specialist next week I have most of ur symptoms and more all blood tests from GP came back negitive, it is a long stressful wait to see what is wrong, This site is good to have a vent and everyone is very supportive, Hope u get some answers soon Hun, x

  • i have been formally diagnosed but am getting a second opinion. the most desturbing thing for me was not the diagnosis but the chaotic treatment which can a) make you worse b)have severe side effects that means you have to take a cocktail of several drugs to counteract the original drugs. treatment for lupus is like a stab in the dark quite frankly and has to be one of the worse diseses to have as there is no cure and i suspect the dugs are out of date.

    on a positive note i told my rheumy and gp that i am not taking the quinine based drugs a minute longer after several months of telling them it was making me worse not better. the top consultant was briiliant. he thinks that i have it mildly and that i dont have major organ damage but my limbs/aches/stiffness/lethargy/photosensitivity/skin rashes/inflammation/severe reaction to moscito bites/eye problems/heart and kidney slightly malfuncioning etc but i feel more in control. very depressed though as i really dont know what to expect and am in constant pain but listened to me and is arranging a brain scan???? and a follow up every 3 months to make sure i am ok. the drugs have traumatised me and catapulted me into ill health.

    basically getting a diagnosis is only the start be carefull and thoughtfull about your health and ask questions dont just take hundreds of tablets a week if you dont have to.

  • Took me 15 years to finally get a lupus diagnosis, and what a relief it was too.

    You do sound like a candidate, but it would be irrisponsible to say for definate that lupus is totally to blame for a that list. I used to slur when I was tired and my vocab was shot. Would loose track of conversations etc, When I told my lupus specialist at first meeting she said it could be due to a stroke as slurring is not normal even with the brain fog so many of us suffer from.

    Try not to fret it. Hang in there , dont give up and you will eventually get an answer.

  • Hi,

    Reading ur post actually sounds alot like me. I am 23 in sept & have been suffering with s.l.e since i was 14. I had to fight to get the doctors to see how much pain i was in. I now go to St. Thomas hosp in London as there is a lupus clinic. I am on narproxen & tramadol for my pain but also have 3 monthly lidocane infusions. Since Feb i have been on steriods & methetrixate(spelling). My pain has got better in time but it always comes & goes. Some days i feel good & can do things, then others i cannot get up without being in so much pain. My partner has been really good but like u i dont think he knows how bad the pain can actually get! Its like they say that there sorry & they understand?! I dont think anyone understands how bad it can get until they go thru it. I feel like a nag alot & it seems some of my friends dont want to no anymore or arent bothered about my progress. Its something that we have to get on with & i find that staying positive about things help. I no that u havent told that its deffo Lupus but please dont get down about things as it will only get worse. Sometimes i gert really down & think why me but i think that its made me a better person in so many ways.

    If u ever need to talk about things feel free. X

  • I am scared, worried and confused at the minute! Having a diagnosis does not seem to matter that much because after being diagnosed with Lupus when I was 15 (now 25), I have just recently been told that I have Stills Disease. Both diseases are very similar and I am still not quite sure whether or not I believe that I have stills and not Lupus. I thought I was having a Lupus flare only to be told by the consultant specialist rheumatologist that he thinks it is Stills disease ( Systemic Juvenile Idiopathic Arthritis). I fail to see how this could make me throw up blood and cause the countless number of different and varying symptoms I have had in the past and still have now. If they were wrong the first time what is to say that they arent wrong the second time around? And I find it a little odd that the specialist seems reluctant to treat me without the results of my blood sample first, which is apparently to assess whether it is 'just a flare' or an 'ongoing thing'. How can anyone tell that from blood test results?!

    I advise that you maybe look into this Stills Disease as well as Lupus as your symptoms are very similar to mine. When I first 'got' Lupus/Stills some of my symptoms included: alopecia, vomiting, nausea, headaches, weakness, tiredness, anaemia, joint and muscle pain, dizziness, severe headaches and migraines, hot and cold sweats with very high temperatures, severe anxiety, panic attacks, heart palpitations,

  • Firstly, thank you all for your replies. I know it doesn't sound very nice, but its comforting to know I am not alone in this and other people understand what I am going through.

    I am going to go back and see the same GP and ask about arranging a blood test when I feel I am having a flare. Also thinking of stopping the amitriptyline as they give me an instanst migraine when I take them, disturbing dreams, make it incredibly hard to get up on a morning (which is always hard without any help from tablets!!) and also a migraine for the best part of the morning. Also gives me a really dry mouth making my thirst worse and give me jaw ache. seems nearly every tablet I take gives me more symptoms!! It is just so hard trying to get through each day, this last year has been so hard. It was my third year at University, so workload was terrible. The brain fog is not helpful when writing an assignment! I'm dreading going back in September to do my final year, and then looking for work after that if my health has not improved. I also want to buy a new car but am worried about my ability to drive as my arms ache from holding them up too long. It is also hard being a mam as well, my son is only 4 so very active and I find it a struggle lifiting him, pushing him on swings etc. Even holding his hand gives me arm ache. All of this just adds to my low mood as I just feel I can't function as the mother/girlfriend/friend I want to be :-(

    @ Franklin853 - I know what you mean about partner saying their sorry and understand. My partner can get quite snappy about it and then apologises and says it is because he does not like to see I am in pain and knows he is helpless at making it any easier for me. I also don't feel like my friends care about what is wrong with me, I just don't even mention any of it to them anymore as I just feel they dont want to hear my whinge on about it. This of course only makes you feel even more alone :-(

    @Dionne1987 - I had a look into Still's disease and I did have a lot of the symptoms but I don't have the rising fever that seems to be a main symptom of that particular disease. I do occasionally have cold sweats but not often enough to of made me think it could be that. Thank you for pointing it out though.

  • I am 54 years of age and have had lupus for years. I have had most all your symptons for years. I know I had blood work for years before finally being diagnosed with cancer that the lupus results were also found. It now shows up in each blood test. I don't have much help except to say it sounds so much like myself several years ago. My family helps me so much plus my faith. I hope you can get help.

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