Flare & neurology appointment

After nearly 4 months of remission (with blood tests in December showing a negative ANA!) I was hopeful that I would continue with my run of good health, with no medication and using diet alone as a treatment. This worked really well - but now unfortunately I am in a flare. :(

Usual symptoms: first signs of feeling like I'm going down with the flu, aching all over, sore throat, feeling that familiar aching exhaustion. Then in the night I was woken up with the joint pain as it really kicked in at 4am. Throbbing shoulder. Today I could barely dress myself so I avoided doing so until lunchtime. Kids have helped me cook dinner and bought me ginger. I've made a strong ginger tea and turmeric too, but I think I'm going to need anti-inflammatory painkillers tonight. I feel terrible!

Possible triggers:

1 I was in the sun all day on Sunday without sun protection (I thought I'd be ok in early February)!

2 The iron supplement the GP gave me for the anaemia contains sugar which I had been avoiding as it's inflammatory.

3 I'd had a bit of a stressful few days with lots going on

I've got a neurology appointment at last tomorrow (great timing!). I'm not even sure how I'm going to drive myself to the appointment and I'm really nervous - I wish I could get someone to come with me but my husband can't get time off tomorrow. I need to get my various nerve pains checked out (and the drunk feeling) but I'm not sure how to approach the neurologist. I've written down the various symptoms in a kind of mind-map. Any tips welcome!

40 Replies

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  • "my various nerve pains checked out (and the drunk feeling) "

    Where are you getting these nerve pains?

  • I get electric shock kind of pains in my left side and left arm. Also tingling/hot/cold sensations on my skin (comes and goes), burning sensation in my left arm most of the time, and stabbing pains in my fingers and toes (also comes and goes). All tend to get louder during a flare.

  • Sounds horrendous..! Did you have these neuropathic pain during "the remission"?

    Is this the first time you see a Neuro? It's probably "lupus".....:( Good luck, hope your appointment goes well xx

  • Thanks! It's my first appointment with neurology - been putting it off for years. The pains come and go so I've just got used to them as part of the 'noise' my body makes! Usually a lot louder during a flare.

  • Hi Dryad. I relate to your story although my kids are older than yours and I have a diagnosis of RA rather than Lupus - but it's morphed into something more unusual than RA now. I too came off drugs and have tried to treat myself through natural methods. Each time I end up too ill to keep this going which is very frustrating. I waited for six months to see the neurologist and when the time came I had to go on my own too. I live on an island though so I flew down and took my walking stick to stop me falling from dizzy spells. I'm not sure what the neuro made of me but he took my symptoms very seriously and I gave him a typed sheet with the chronology of my symptoms and which affected me most severely.

    My neuropathic symptoms are quite similar to yours only mine affect both hands, feet, legs and arms and are now constant. The bolt of lightening pains can apply anywhere at all with me but mainly affect my hands/ knuckles and wrists.

    He organised tests for me six weeks after this first consultation and these included MRI of neck and brain (clear apart from arthritis), nerve conduction tests (also normal) and serum blood tests with a lumbar puncture. The blood tests are still not through and nor is his letter - a month after this 24 hour stay. But the cerebral spinal fluid does at least show high levels of Immunoglobulin which apparently (according to my GP anyway) indicates that I have an immune mediated small fiber neuropathy. I don't know if you've looked this up but the symptoms you describe could correspond. This can be part of any connective tissue disease but is more common with Lupus and Sjogren's Syndrome.

    I hope your neurologist is as thorough as mine. It may help you to write it all down on one sheet of A4 and give it to him or her to keep for future reference. Good luck. Twitchy

  • Thanks Twitchy it's really helpful to hear what tests you've had - 'immune mediated small fibre neuropathy' does sound like what I have (I looked it up!).

    It sounds like you had a really good neurologist, very thorough - I'd be interested to hear what the results of the tests are. And what treatment is offered.

  • Glad to be of use Dryad. I will post when I finally get the results of the serum bloods. I have to say that so far all the treatment I've been offered has been for symptoms rather than anything to suppress my immune symptom - which GP and I think is probably what I need. I have tried but failed to tolerate 3 disease modifying drugs so far and am told that the other drugs for RA/ Lupus probably wouldn't help the neuropathic symptoms. I'm on my third symptomatic treatment and think it may have to bite the dust too as I'm now feeling very ill - but it could all be the autoimmunity of course. Hard to know really!

    Tx

  • So sorry dryad. I know I have been trying so hard to stay off medication like you. Ironically, I have been getting these sharp shots of pain in my hands, wrists and sometimes in arms. Feet too. I don't know why these are just showing up now. Never had before. And in my neck and head. I know My bloodwork shows nothing. Very frustrating. I plan on just dealing with it and was thinking of trying vitamin B1 for nerve repair. Haven't tried that yet. I sometimes think its a mineral deficiency or something. Not sure what it is. I hope you find answers, and please share with us. Take care...

  • good idea- i found taking magnesium and bvits seemed to turn down the nerve pain noise a bit and reduce headaches too. its frustrating when new symptoms turn up isn't it? take care x

  • Hi Dyrad get back on your diet my daughter is similar to you controls it most of the time with diet, when she starts to feel achy sore throat and joint pains she ups the green juices to about 2 litres a day for a number of days. Usually works..

    You know how you feel just tell them you know this is the start of a flare and you need some steroids to calm it down or which ever drug you've been prescribed in the past.

    Good luck

  • Thanks for reminding me - need to get on the green juices. Inflammation=acidification so I need to alkalise with alkaline foods and juices. I know that works. I'm also drinking ginger tea which is nice and warming at this time of year and anti-inflammatory too.

  • I am so sorry you're havig a flare it's so frustrating and disheartening but I have to say I am so excited to read about your cutting sugar and taking turmeric. I have done both lately the sugar always but now much much stricter & have found my scleroderma to be almost completely halted :) the turmeric and eating olives (had a bizarre random craving: didnt like them until a month ago!) seems to have helped too :) im still on hydroxychloroquine but nothing else for SSc so I feel super happy :) inflammation is the function behind all autoimmune conditions so there is definitely something behind this. It's still something to be able to have some control. Good luck regaining yours and at your appointment - you'll get through it :) maybe ask yor husband to read your notes and let you know if you've forgotten anything you've mentioned to him or he's observed? Xx

  • Really pleased to hear you are finding improvement with cutting out sugar and taking turmeric :)

  • Hello dryad...I haven't got much to add to these good replies...but because I've been managing a very similar complex of chronic neuro cerebral lupus-related (we think) symptoms I just want to say that I'm v much feeling for you....over decades of seeing neurology & neurosurgeons as well as ortho surgeons about my version of NC symptoms without success. Briefly: the one test I haven't had, though, is spinal tap, but my bloods immunoglobulin A & G are just below normal...and we know my cervical & lumbar/ sacral spondylosis is involved in my NC symptoms because since the 1990s a series of pain consultant bilateral spinal facet joint denervations have helped minimise my chronic tendency to the sort of nerve firing & muscle spasm you describe ( but these procedures haven't helped my long term persistent daily peripheral neuropathy, or predisposition to vertigo, chronic fatigue, cognitive impairment etc)

    For what it's worth, I think several of the greatest things you've got going for you are that you know you have a primary (lupus) and you know your body & symptoms + your reactivity very well, + you've been very effectively managing your version of lupus successfully for some time. These are great achievements which I hope help you feel more empowers & confident as you engage in this consultation with neurology

    A note of caution: At my latest rheumatology consultation in dec & at my last gp appt this week, we reviewed my chronic persistent NC symptoms & agreed that because daily myco + pred tapers when my NC flares badly + lifestyle management (I've been taking quality turmeric etc supplements for years etc) are at least minimising these symptoms pretty darn well, I can avoid consulting neurology...but without provocation my consultant & gp are emphasising that when the time is right & I am eventually referred to meurology (which seems inevitable) we must make sure the neurologist I see is experience in diagnosing & treating autoimmune patients (esp lupus patients). Certainly, other forum members grappling with neurology consultations have given me the impression that the consultant needs this experience. Am not sure what you know about your neurologist's background...but my impression of you is that you're v experienced & capable, and that if this neurologist doesn't appear experienced enough, then you'll find a second opinion from a neurologist who is

    Hope you'll let us know how you get on

    Wishing you all the very best

    xo

  • Thanks so much for your advice Barnclown - I hadn't thought to ask the neurologist if he is experienced in dealing with lupus/autoimmune patients. It's the whole picture that's important - can't separate all the bits of the human body effectively. And thank you for reminding me that I should have confidence in how I've been managing my lupus - it has been working and I am moving in a positive direction despite this recent flare up. Thank you x

  • You're v welcome....and thanks for your thoughtful reply

    Following on from that note of caution: I've found consultants can get huffy when asked if they have specific experience etc. And I have screwed up initial consultations by asking stuff like that. But, hmm, am sure you'd feel your way into this carefully.

    Now, if poss, i ask my other reliable drs for recommendations re which specific consultants or Hosp depts I'd best be referred to...then I google the consultant to check his/her areas of expertise. Equally, I also Google nhs hospital depts to check which consultant specialises in which aspect of their dept. Of course, on the nhs you often see locums & drs not even listed on the dept webpage.....but at least you have some idea of the dept's strengths

    My gp recommends that in an initial consultation, I let whichever consultant carry on without asking the experience ? until the end of the appt...by which time you usually know how things are going & whether you want to ask the ?.....then, if you feel you need to ask, you can frame the experience ? sort of like this: thank you very much, very helpful, now, considering my primary condition, lupus, have you a colleague who might be able to throw even more light on a case like mine involving lupus?

    Courage

    XO

  • Brilliant! will try that approach - and google my doctor!

  • These links may interest you, dryad, & others learning about neuro cerebral symptoms & lupus:

    onlinelibrary.wiley.com/sto...

    onlinelibrary.wiley.com/sto...

    Papers like these underline the likelihood that not all neurologists will have the same level of experience & knowledge re lupus patients....+ not all will be as up to date re relatively recent advances as a lupus patient might hope...specialisation is inevitable in today's world....

  • unfortunately i can't access these links - 'forbidden' it says lol

  • argh! and i tested these links several times after posting them above....just now, i tried them again & was refused like you. weird. not long ago, another forum member posted a link to another article which actually provided links to these 2 rheumatology papers. i'll see if i can figure this out and will get back to you asap. they really are good papers, recent, but v academic.

  • ok, try this link

    it should take you to the gupta guide article posted a couple months ago on this forum

    then click on the sle articles highlighted in blue within the gupta article

    you should be taken to the wiley archive

    once at wiley you'll need to access the actual articles by clicking on their headings re full article or abstract, and then for pdf of article etc...this is a bit long winded, but if i can manage it....

    medpagetoday.com/Rheumatolo...

  • thanks!

  • Hi Dryad I have had really bad pains in my shoulder for years and after pushing hard I have just found out it is my spine that is worn and that causes the pain in shoulders and neck. So make sure they check everything. Gareth

  • Dear Dryad,

    Because I wasn't diagnosed at a young age, and was already a senior, I will probably never go into remission and don't expect to. The flares will come unexpectedly amd the best thing to do is to stop what you are doing and do nothing. They normally pass within a few hours. My doctor prescribed Tramadol, which helps with the debiliating headaches. I am 71, so I can't tell whether the bone and muscle pain is just from aging or Lupus. The sun does wear me out too, as I live in Florida, but we are at a pool if it's warm and sunny, and the exercise is important. this morning I played tennis - my heart was really racing. I posted a week ago about my LDH. It's still 30 points above normal, so the Lupus is affecting something. It sure didn't help my tennis game! I hope, with rest, your will feel better. My feelings are that I prefer waiting for the flare to pass than take meds, which have side effects. We feel lousy enough!

  • Thanks for the advice. I am resting and have cleared my diary. I'm taking Naproxen because the pain is so bad - usually I can ride it out, but not this time. I don't like the side effects but at least I can sleep.

    your game of tennis sounds fun :)

  • Thanks...but my tennis game has gone totally downhill. I dont think my partners think it's fun when they lose with me. Before I got sick, I would never lose a set. Now if I win one, it's a rarity. It's the end of the day now and I can feel the fatigue and aches coming on. I can't take many drugs because I am on Coumadin and anything I take would have an interraction. I take Xanax at night so I sleep until around 4-5:30am - take my Synthroid - and go back to sleep until 6:45am. By 6PM - I've had a full day and I am exhausted.

  • Rest well tonight x

  • Dinner and dishes done - everything put away - and that is all I plan to do tonight. We keep canceling dinner plans with friends because I am just too tired to socialize much. Thanks, Dry!

  • Dryad...I have been experimenting with bromelain as well. It is an anti inflammatory product. Actually, the core of a pineapple. I believe. It works. I could have inflammation in my ear (can't get a q tip in to clean), and after I take the bromelain....I can get in my ear. I haven't experimented with it with headaches. My ice pick headaches I have been getting recently, I up my dosage of natto k. I find that helps. My headaches seem to ease. Still experimenting. I was taken turmeric, but stopped because I think it stressed my scarred kidneys. Keep working at it. I also take vit c when a sore throat is starting. Colostrum (first milk from a mother...actually a cow is what they sell) I take before going to bed, the sore throat is gone by the morning. Boosts my immune just enough. Feel better....hope this flare ends quickly.

  • Not heard of that before.. interesting. Must try that!

  • UPDATE: My husband managed to get home early from work and drive me to my appointment with the neurologist. He was really nice (thank goodness - I was nervous of getting an unsympathetic one!) and listened to all I had to say. I gave him my notes and he appreciated that.

    During the examination he noticed that I have slightly less response from my reflexes on my left side (which I'd not noticed before) and it occurred to me that most of my joint and nerve pain is usually on my left side too. He's going to test for Vasculitis with an MRI and if that's ruled out he'll do nerve conductivity tests. I've never looked at Vasculitis before but it does seem to match some of my symptoms. Hopefully the MRI will rule it out!

    nhlbi.nih.gov/health/health...

  • And this list of symptoms also interesting: my.clevelandclinic.org/heal...

  • and this - vasculitis and lupus:

    lupus.org/answers/entry/wha...

  • Oh no, I'm so sorry you're flaring. You inspire me to live healthily and each time I don't get on with a drug (like the last one that somehow managed to fry my brain and now I can't open my eyelid properly) I think of you and your courage to do it without drugs.

    Good luck with the MRI and everything else, do let us know how you get on please.

  • Sorry dryad....why do the symptoms just keep adding....I don't get why it changes and progresses. A preventative medicine student told me that his cousin had lupus and was going to lectures and naturopaths and she was still struggling with getting answers. I just don't get why it's not just one thing. It's like the whole body is off. I have had a naturopath tell me that my lympatic system was sluggish. Could this be The problem? I know I have always had hormone problems. I know that exercising seems to help me feel more normal, but it seems to rubber band back to the same condition later that day. Keep posting..we all have so much to share. Maybe we can find answers.

  • Thanks for your supportive comments. It really helps to share thoughts and feelings with you here.

    I share your frustration Natura, being a systemic illness it would seem to mean that the whole system is off balance and therefore shouldn't the whole system need looking at rather than individual parts?

    I have struggled with anaemia and heavy periods all adult my life, which could be a hormone imbalance that led to developing lupus, but I'm finding it really hard to convince my doctors to treat the low ferritin levels. According to my acupuncturist, it doesn't matter how much iron I take, it will not necessarily top up my iron stores (ferritin) and it's low ferritin that leads to anaemia in the first place. I might have been born with low ferritin levels for all I know. Anaemia might be one of the triggers for Lupus (so many people with lupus seem to also be anaemic too).

    I've asked the GP if I can get ferritin infusions, but he seemed really uncomfortable with the idea, saying it was only for really sick old people. The problem has been that I can't tolerate the iron tablets (nausea and constipation), the iron supplements in health food shops aren't strong enough, and the iron syrup he prescribed me is very sugary - and I suspect contributed to this flare up (sugar is so inflammatory for me and I was taking it every day for a month before the flare).

    Hormones definitely seem to be a factor. It's frustrating that conventional doctors don't seem to be joining the dots.

  • Hi Dryad

    I have had Lupus for 25 years and severe chronic anemia for most of this time. My ferritin levels are always in my boots and I have always felt that iron preparations cause me to flare. My Consultant is most derisory about this theory so arranged Cosmofer infusion in 2012. There are implications for Lupus people having Cosmofer - as I found to my cost and I was very ill afterwards. I then had the very expensive Ferinject infusion but the result was the same. I can never have another iron infusion, they are much more potent/toxic than people give them credit for. I have had quite a few transfusions over the years but they too can cause flares and also carry risks so I take easy-on-the-stomach preparations from the health food shop and orange juice with good long term results and ferrous fumarate in times of greater need. My GP monitors my monthly blood tests closely and is then quick to spot downwards trends. The result is a stable HB of 10 for nearly a year - previously unheard of! hope this helps. Clare x

  • Dryad...I think you are onto something. I am very careful with iron. Too much iron in the body is not good. And I think,because this disease fluctuates for some reason unknown, it could be dangerous to take iron when your levels r normal. Probably drs reluctance to treat it as so. Very frustrating. Medicine needs to do more. I believe we r stuck in the past in that sense. That is why I am very interested in this new preventative medicine doctoring. Met two people already that are going into. Also read somewhere zinc lowers iron levels. I was taking that when I was getting sick. Now I just take vit c. You probably were born with this. I believe it is genetics. My mom was on iron pills. (She died at 48 from colitis and became septic and her liver went). Keep looking for answers. I also got very white hair young. Read copper deficiency. Interesting.

  • Dryad, which reflex was unresponsive? Ankle reflex? Hope you'll get to the bottom of this very soon xx

  • Hi Omega, the consultant was tapping my knees when he noticed that the left one was less responsive than the right. x

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