From bad to worse

Hey everyone;)I had my appointment monday with the rheumy,i ve been particular bad for 12 months and really bad for last six,infact the last three months im flaring every week ,not recovering before another flare ,there set off by the simplist trigger even a heavy conversation with someone ,my whole system is completely out of sorts .All my neuro symptoms are tenfold during this time .I went with high hopes as always only to be told he feels my flares are not lupus flares as he believes lupus is sitting quiet ,its fibromyalgia flares ????????????i could scream ,i know what a fibro flare feels like ,not like this ,.I dont know or hear of anyone suffering from fibro flares that have huge lymph glands ,and as if your literally dying ,like your being poisioned ,such a toxic ill health feeling which naturally brings feelings of impending doom.He comlpetly brushed it off and said lupus wouldnt flare this much,ive lost faith .He also didnt take me up on my request to investigate my lymph glands which are a huge problem nor check my bloods he said he did that LAST JUNE!LOL!i was much better last june than now ,why wouldnt he check ?im totally exhausted mentally and physically and my health is rock bottom as a result ,its affecting my family also ,lupus is vile its robbing me of all.I am however awaiting tets from and endo to do with adrenal gland involvement ,when i mentioned could i be having adrenal crashes to consultant he totally brushed it off >Ive lost faith in medical system .So ive left feeling so deflated ,no advice other than pace myself (well lying in bed is pacing )take my pain meds take my ssris (which are making me worse)no blood tests no nothing ,i cant get a second opinion theres only one rhuemy here .If any of you guys have advice i would be ever gratefull ,thankyou so much ,brave')

11 Replies

  • HI Brave

    This sounds very similar to how I was last year, I had a nine month flare and was totally desperate.

    My advice would be to get a referral to another specialist, the one you are with obviously isnt listening to you. Do you have another hospital you can get to? If so you can go on the hospital website a see the names of consultants and the phone the department and ask if any of them have a special interest in Lupus then get your GP to refer you.

    Hpe you get some help soon


  • Thankyou ,we only have one small hosptital here on the island ,its that consultant or none unless i pay to fly to mainland;(

  • You need to get onto the mainland at a good specialist who can listen to you properly. This is getting silly and while you wait to be taken seriously the lupus keeps producing antibodies. I know it will be an expense and very tiring but I can't see what other choice you have. No wonder you're deflated, I would be screaming in your place.

  • Hi purple top ,i am screaming ,which is why i think im so unwell as im exhausting myself trying to come up with answers ,i really have lost all faith ;( i was told last june of the lupus/connective tissue disease then added fibromyalgia ,he says its sitting quietly ,yet why do i keep having flares???he says well there not lupus flares so it is fibro flares,as im medication sensitive he says because i falied to tolerate hydroxy i prob wont tolerate anything?and im just to carry on with pain meds and ssris,the ssris make me super anxious and wired ,im already like that at the best of times,i dont need an ssri ,my body isnt strong enough to cope with the stimulation ,i need balancing and calming ,i cant afford to go to the mainland ;(what blood tests purple top should i be asking to check on a regular basis ?as im quite new to lupus i assume its just standard blood count and imflamatory markers?i feel lupus is truly affecting my nervous system as the symtoms are of a very M.S like nature ,but he brushes it off as fibro ,thanks purple top hope your well? brave

  • I did start to respond but my response disappeared, so apologies if it appears twice here.

    Unless you have done the full set of blood tests recently, I would think there is a case for you having them done all over again. That includes not only the full blood count and inflammation markers but the autoantibodies, the liver function, the kidney, the complements, etc. This is a progressive disease, so it is conceivable that the test results change over time, not only because of a flare but also because is unstoppable progression.

    You need to challenge the doctor when he puts it down to fibro. Print down the fibro symptoms from the NHS site and ask him where in there he can see your swollen lymph glands, for example? What about the neuro symptoms, etc, etc.

    And also remind him that regardless of which illness causes the pain and suffering, his duty is to make you feel better and he isn't. Suggest that perhaps he should refer you to an immunologist who could look closely to your blood and immune system and see what causes the symptoms that are not due to fibro. And perhaps a neurologist too. You can also say to him that you have been sufficiently patient with his proposed plan but is not working and he needs to do something different.

    There is no need to cry, scream or threaten - as long as you keep your voice firm, lower the tone of your voice so you don't give the impression that you are unhinged (which could make him ignore what you're saying) and look at him when you speak, he will see that you are serious. And hopefully do something!!

    As for me, I'm trying to get to the bottom of this numbness in my hands and more recently (today), my lower legs and heels. It drives me crazy nor knowing what causes it and whether I need to do something about it. I'm worried about vasculitis, which is another one that is hard to diagnose. Oh, well, I will see how I get on in the next week and then maybe go see the rheumatologist.

  • And tell him that by the way, he has no way of knowing whether your lupus is quiet anyway, there is no test that shows disease activity other than your symptoms the way you feel them. So if you're telling him you're having a lupus flare, then you're having one and he ought to take your word for it. Unbelievable how patronising some doctors can be, they haven't got a clue how we are feeling, so they should stop patting us on the head!

  • Purple top thankyou so much ,im so exhausted with all the things i have to prepare in terms of appointments ,ive completley tired my brain ,even emailing is a challenge;(I hope you get to the bottom of your numbness ,are you worried?im sure you have a plan to fix it?you well ahead with knowledge,thanks brave;))

  • Hi brave you don't mention what meds you are taking. Your rheumy sounds useless. I have never done it but does st. Thomas in London help. Maybe you could phone them and get an idea of the tests or meds available with lupus. Or they may recognise your symptoms and offer some suggestions.? Either way try and find someone else to talk to as your guy sounds pathetic.

    I know you can get one off private appointments but if you can't get to the mainland you might not be able to afford it. Is there a private clinic on your island?

  • Its the same consultant here as in private clinic,i have to say he obvoiusly knows lupus well , ,he works on symptoms ,but as im so sensitive to meds and after my hydroxy episode i think he is reluctant to suggest anything else ?but my argument is why wont he look at my bloods again?why wont he investigate my lymph glands instead of just assuming its all related?im only taking codeine and paracetamol ,omeprazole ,i havent slept in months ,its proper insomnia ,but im so exhausted i just dont understand ?thanks foryour advice

  • Hmm I know it's funny but if you go private with him he has to run the tests you ask for but unfortunately he will be billable but it might show him your serious.

    Has he tried you on mycophenolate mofetil? I'm on that as I didn't take to azathioprine think that how you spell it I forgot it when I couldn't take it. My gp has a refreshing view take it and if it doesn't work stop. As long as you are willing to try as I am not sure what happened with your hydroxy episode? Hope it wasn't too unbearable. I went through a couple of meds before I found something that helped. Pain killers on there own do not help much. Has he suggested steroids at all?

    Sorry to bombard you with questions, especially if you are feeling bad, unfortunately exhaustion is part of lupus, I have also had swollen lymph glands so it may be part of lupus, your body can go through a wealth of symptoms. I have also had insomnia but never took anything for it as I found I kept sleeping for short periods of time. It's your bodies way of coping with the turmoil.

    Hang in there brave the only predictable thing about lupus is symptoms change.

    If you want to vent maybe write him a letter explaining all your feelings, I believe they have to respond to them and if does not make sense fight. If you feel up to it do some fact finding eg about frequency of testing etc and quote it in the letter that way he has to provide you with an answer

    Stay strong, we are all here to support xx

  • Twist.....thankyou great advice ,i was thinking of dropping him a line,i had all my bloods etc private ,ive had a few investigations ,mri,nerve conductions ,all normal.

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