Upset and Frustrated!!

I'm feeling really down and frustrated. I've just had my appointment with neurology today and I was really hoping for an explanation for all the pain I'm in, but it was fruitless. The good news is that the meningioma that showed up on my MRI doesn't need treatment (surgery) but does not account for any of the widespread pains I'm currently getting (on top of the lupus joint pain):

-hurting all over with a debilitating fatigue

-burning tenderness in my arms and legs, particularly around the elbows and knees (+right foot)

-shooting/electric shock pains mainly down my left side but also in my elbows and knees at times

-tightness and pain in my muscles, with spasming and twitching at times

-stiffness in the mornings often leading to flu-like aches all day (sometimes severe and keeping me in bed)

-my IBS has also got worse (mainly at night)

-stiff neck with glands up (often with sore throat and migraine-like headaches

I was hoping that the neurologist would be able to diagnose SOMETHING but he just offered me pain meds. I suggested that perhaps I might be developing Fibromyalgia, but he didn't know anything about it. He even tried to tell me that it couldn't be that because I had Lupus already - but I know at least 2 people who have both. After pressing him for SOMETHING to help me that wasn't just drugs, he said he'd write to my GP and suggest I get referred to a Fibromyalgia clinic in London. If only I was well enough to travel to London!! I can barely get out of bed some days! He was really crap at listening to what I was saying. The way he was talking to me was undermining my confidence in myself and what I know about my body. I left in tears and feeling like a mental case. Thank goodness my husband came with me and could reassure me that he was just a blinkered arrogant specialist doctor who was rubbish at listening.

At least I've now been on LDN for a month, and I'm noticing a definite improvement in my mood. I no longer feel desperate like 'I can't bare my life'. I won't be needing anti-depressants now. I might also have noticed a slightly better tolerance to pain, but it's still early days.

Does anyone else here have Fibromyalgia as well as Lupus? How did you get a diagnosis? I'm thinking my Rheumatologist should be able to diagnose this so why isn't he? I've told him about these symptoms, he should know what it is! Has anyone else started to question yourself after talking to doctors - after they make you feel like you must be crazy?

11 Replies

  • Yes. I am going through the same thing. But don't give up.

  • Hi Dryad,

    I had it the other way round: for thirteen years I was told I had fibromyalgia and that all my symptoms could be attributed to it. WRONG! Finally, I had the luck to move to a new GP, who was recently qualified (and therefore it seems more up to date with current medical thinking) Sent for a whole raft of tests that previous GP had refused. Tests showed I have SLE Lupus and my medical history is consistent with having it since childhood. I have both illnesses and this is not uncommon. Fibromyalgia is thought to develop secondary to Lupus, not the other way round. Your symptoms sound spot on for Fibromyalgia. The neurologist you saw sounds a shocker but I'm not surprised; the one I saw a few years ago was useless and patronising. Mine actually wrote to my old GP stating there was nothing seriously wrong with me. He concluded this after checking my knee reflexes, pricking the soles of my feet to see if I could feel it (yes, my feet hurt like hell and I feel pain in them every day!) and watching me walk across the room. I was as stiff as a poker and waddled like a drunk penguin but this was just fine as far as he was concerned. He also asked me to grip his hands as tightly as I could. I have a weak grip, often resulting in me dropping things or not being able to hold cutlery, cups etc. When he saw how weak it was, he just got cross and told me to try harder! I refused to ever go back to him and am now under the care of rheumatology, who seem to understand Lupus and Fibro much better.

    Don't give up. It seems that the medical profession like to stick with one diagnosis and not add any more illnesses, perhaps for cost reasons? My new GP showed me a letter on my digital records which I had never seen. It was dated a couple of years ago and it was from the hospital, complaining that Lupus testing was expensive and unnecessary due to my Fibromyalgia diagnosis. So my old GP was clearly being put under pressure by my local hospital to not refer patients for testing. I was shocked, as untreated Lupus is serious. The tests, so I have been told would have cost no more than £150. It has damaged my eyes and heart. At least fibro just hurts.

    Sorry for long post! Good luck.

  • Thanks Misty - you have given me hope. I wonder too about the cost of an additional diagnosis? Anyway, I have decided to move on and put today behind me. He was a rubbish doctor, but just one step on my journey to finding out what is actually wrong. I'm hoping to catch Fibromyalgia early (if indeed it is that) and try to mitigate stress as much as possible in my life as that clearly has an immediate effect on my health.

    We are moving house (very stressful!) but to a new town, away from neighbours that have made my life really difficult for years. And I'm going to get 2 kittens to keep me company during the day when I'm on my own and to make me laugh! I'm hoping this will help!

  • hello dryad,

    I was diagnosed with lupus in 2005 and then fibromyalgia in 2014. so yes you can have both conditions. I personally found that my symptom's with lupus came in waves whereas I now have all what you describe every single day.

    my rhuemmy diagnosed FM as my bloods stayed steady levels even when I was feeling so poorly. I can literally lay on a dirty pavement and sleep.

    I am so so exhausted, yet FM prevents me from getting into the deepest stage of sleep so I can never fully recharge my body.

    your long list of symptoms are same as mine, ive depression too.

    I am so sorry that doctor treated you like that, sadly I too have doctors/specialists with no empathy and I have to tolerate their attitude towards me. its been 10 long years battling the wolf within me but we have to stay strong. I learnt a lot from the wonderful people on this forum about lupus and I too have learnt a lot from my fibro buddies on the FM forum too. without both forums I wouldn't be here today.

    sending you gentle hugs xx

  • Thank you! This forum is indeed a lifeline! I don't know what I'd do without your support some days! I have joined the Fibromyalgia one recently too. It's so good to share things with people who really know how it is. x

  • Glad to help. Congratulations on escaping the neighbours. I've been there too. Awful, just adds to all the stress and makes symptoms worse. I got rid of mine eventually, but only after the police and entire neighbourhood got involved. Stress and lack of sleep can definitely bring on Fibro flares.

    Peace and happiness in your new home.

  • I was diagnosed first with lupus and later with both. At the time all fibro meant to me was I had muscle aches and not being able to sleep. Now it seems to mean you are crazy and over sensitive to pain. Then a rheumy put me on a prednisone trial--20mg, 15mg, 10 mg, 5 mg. Muscle pains disappeared. I don't think I have fibro anymore, but it comes up now and again. Every problem you have will be attributed to fibro. I wouldn't go looking to get diagnosed for fibro. You end up in a very strange box. There are no drugs they can give you that your rheumy can't give you. And they don't work very well for many, either. A lot of people with lupus don't sleep well either. Fibro just triples your frustration with doctors, especially many doctors "don't believe in fibro," or think it is psychosomatic and you must be depressed.

  • Hello there dryad,

    I have sle,fibro plus many more and every diagnosis took time.I also had awful neighbours a few years ago and although hard work and stressful getting away from them has been a great turning point so happy for you that you're going elsewhere for a new start .It does all sound very much like fibro and it can hit you in waves and drag you down but finding an understanding gp and rheumy will help there are fibro management courses run at our local hospital which I've heard are quite helpful (I attended one of the first trial pain management courses which taught me some useful techniques) and at least you meet up with others going through the same.I agree with the one thing AnnNY says is that once diagnosed with fibro nearly everything is attributed to it.I remember joking with hubby if I went to the one gp to at old practice with a broken leg he would say "oh that's your fibro!"which was proved when I went back to see him three times with sore swollen neck to be told it was fibro flare until I saw a locum who took one look and three weeks later was having biopsies,surgery and radiation treatment as it turned out to be thyroid cancer . Two years clear now but learnt a big lesson in not to be fobbed off.You know yourself better than anybody else so stick to it girl and get the answers and help you deserve.

    PS please please post pictures of kittens when you get them☺

    Best wishes for some happy moments and relief soon


  • OMG! I can't believe they overlooked cancer!! Glad to hear you have been clear for 2 years now. What an awful thing to go through on top of everything else.

    I will post pics of the kittens when I next see them. I can't wait!!


  • Hello,

    I've had Fibromyalgia for over 3 years and it just seems to get worse. But besides that I have osteoarthritis through my whole body. So that doesn't help. I'm on pain meds and they only ease the pain but it is never gone. There are days I don't get out of bed til noon/ 1pm. Sometimes it is all day. But I just go on.

    Just stay strong and good luck to you.

  • Yes you can have both, I do, I also have Sjögrens and Raynaud's plus an endless list of other illnesses. In fact if you have one autoimmune disease you are more likely to get more, oh the joys! Lol

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