Hi everyone. I haven’t broached this issue before as I have been brushed off and been prescribed antidepressants and even Diazapam each time I have tried to discuss it with doctors. I am not sure if it is peculiar to me or maybe I am just peculiar. When I feel this physical agitation coming on it is not an anxiety issue but I struggle to keep still, get clammy and just cannot sleep. Every single time it is a sign that something is brewing, a UTI, cold, stomach upset or flare. Last night was one such night and sure enough today I have yet another sore throat, nausea and a headache. Does anyone else get this sort of sensation? If so have you successfully had a doctor take notice of the symptom or explained it. Please tell me that I am not going mad 🙏🏻
Agitation: Hi everyone. I haven’t broached this... - LUPUS UK
Agitation
I experience exactly the same thing Cecily, with hot and cold flushes and a sort of internal shaking.
It's almost always indicative of a flare for me and quite different from 'normal' anxiety or menopausal flushes.
It's as if I have the physical signs of anxiety without any mental symptoms, if that makes sense?
My GP always dismissed this as anxiety (together will all my other ones before being diagnosed with uctd!)
My rheumatologist has said that anxiety can be a symptom of connective tissue disease.
It's a horrible thing to have - hope this episode doesn't last too long for you.
Take care xx
Thank you so so much. You are the first person who actually has described how I feel and understand how deeply uncomfortable and odd it is. I really appreciate you taking the time to respond. Has anything helped you? I can honestly say nothing has with me. I have tried the antidepressants, the Diazapam, antihistamines, extra pain meds nothing stops it or improves it. I am so sorry that you have it too but I feel so relieved that I am not alone xx
No nothing really helps sadly.
I take mepacrine and LDN every day - these help with other symptoms.
I have severe allergies and so take certirizine every day.
Funnily enough, for me, this does help with 'normal' anxiety!
It's frustrating that medics dismiss this, as i feel something is going on in my body but I don't know what!
I do try to relax and do TaiChi, meditate etc - hasn't stopped these feelings though.
I do see an osteopath very regularly (not going to for the immediate future) and this does help alleviate things, if only that she seems to understand how I feel and even asked if I get the internal shakes, before I'd described them.
I haven't tried antidepressants as I honestly feel this is a more physical symptom for me.
If you ever want a chat, feel free to pm me.
Jilly xx
Thank you Jilly that is so kind. Already I can feel the deep throb of the genital ulcers starting up again. I have only been free of them for less than a week. You get so fed up of your body beating you up don’t you. I actually had a little melt down. My hubby came in from the garden and wondered what had distressed me. I told him I am not alone someone else feels this damned agitation too. It means the world. After the arrogant Rheumy told me I had Fibro and hysteria I have been beating myself up that I am making myself ill xx
Very interesting to read your posts. While I don’t suffer exactly as you - I’m a Lupus and Fibromyalgia sufferer - it would be so good to know exactly where you are based. When speaking of doctors and treatments for example. I think a lot of members may be in the States? I’m in Norfolk in Britain. Thank you.
I am in South Wales UK
Thank you.
Hi CP. During flare up or just pre flare I get like I have drunk about 20 cups of coffee and really struggle to sleep. Feels like everything is buzzing. It's horrible and exhausting. No answers for you unfortunately but lots of sympathy. Maybe one day we'll figure out why but it's definitely not just you x
Thank you so much Lou. I hope you are as well as you can be and safe? Xxx
Yes that is it. The only relief or maybe comfort is a better word is to constantly move my legs. I annoy myself with my chair squeaking from it. I am so pleased I posted about it because this has been happening for nearly eleven years to me. I will never mention it to another doctor because they have made me feel so foolish. I really hope that they do come to understand the cause of it for future generations Thank you so much xx
No not mad I’ve had for years also and along with other things waiting for neurology appointment too. Unlike you I have an awful gp that for years just relates everything to fibro which I dispute, simply because multiple unfitting symptoms, and made to feel crazy. 7 years ago I was told these symptoms were menopause but still no signs of that either still regular as ever heavy periods which have plagued me from start of them , my mothers cancer spreading to her brain was diagnosed as menopause before hospital diagnosed properly. Kk’s description is good, mine is more like a pan of boiling liquid with little spits feeling 😂, funny how we find hard to explain 😂and in my left leg my husband and I sat and watched it as it was like watching your heart pump but in your leg.
Thankfully my days of feeling crazy are over, sadly as now rather than feelings of symptoms many can now be seen.
Like you I suffer the lights in supermarkets, ironically doc surgery too though that’s somewhere I’ve chosen not to go back to, and for second year suffering the sun. Glad you will be seeing neurologist and wish you all the best🙏
And must say your dogs I’ve seen in other posts are absolutely adorable, and my dog is also my best friend, my comfort, my strength my all 😍 x
I am so very sorry about your Mum. My own Mam’s cancer was put down to anxiety and she was under a psychiatrist until she collapsed and by then it was too late the bowel cancer was at stage four and had metastasised. I know our doctors are not infallible and they do not have magic wands but they should listen actively and try to help.Yes my boys are so loved. Last year Dylan went blind and had two major operations to remove his inner ears. Amazingly he can still hear, the vet says from vibrations and hearing cells but he is our little miracle xx
Thankyou Cecily, yes my poor mum passed at 47, already had breast cancer and doc still didn’t put symptoms to spread just said menopause. Same with brother and when all witnessed not heard through grapevines you lose faith and having silly excuses because bloods ok yet still symptoms 2 years on no I have little faith despite the good work nhs do, I personally feel failed all but ent and couple of others trying to help but not their field. A miracle is what I need.
Wow 🤩 Dylannis a little warrior, how lovely , and they both look lovely, just shows how looks can be deceiving to problems 🙈🤗 I can tell they’re loved and it’s great to hear another dog lover 🙌🏻 My boy is my star, he was coping ok with walk down but he’s missing the beach, I feel awful, he sees the sun and equates the two and keeps getting excited and I guess he looks at me saying why? You know where I want to go ☹️😍 it’s great hydrotherapy first his arthritic joints so he really is missing it. One of my past dogs went blind, they cope amazingly with live don’t they.
🤗x
My hubby is taking our boys on two half hour walks when there are few people around but they are constantly at him to be taken out. Thankfully Brodie who is a real pudding loves a game of ball in or outside the house. I have bought Dylan a ball with a light in and a ball with a bell in but sadly he runs right past them. He enjoys a rough and tumble and playing with his tug toys but his favourite is a child’s teddy bear which he sucks. His condition is very rare. When we noticed he had started to walk into things we took him to the vet and were totally devastated when she said he is totally blind I think he has a brain tumour. She then felt his tummy and said there is a mass in his liver. She took him for a scan and then told us we had a blind dog with a liver tumour and chronic inner ear condition and we should put him to sleep. We were horrified and devastated. I asked for pain meds and to take him home and spoil him first. I started to research his symptoms and it did not add up so we went back to the vet and said do blood tests and referral to the Veterinary Eye Hospital. We found Dylan had a liver infection and a rare condition of the liver in that it does not make or store vitamin E. The vets at the eye hospital were amazed at him. There had only been one other case there in 30 years and all the research said that it is a condition accompanied by severe neurological issues and eventual death. He took part in a research project that the vets did with doctors as the equivalent in humans is Stargardz Disease.We have him on high dose vitamin E and while he is a little weak on his back paws it does not stop him from eating, sleeping and enjoying life xx
That’s funny my boy jag loves to suck on his soft toys too , he does this but eventually could be days could be months but then he just shreds them and gets stuffing all out 😂😂
He’s has a kong toy for two years but Sunday managed to demolish that 😂😂
Poor Dylan that is very sad but how great you got another opinion and he is enjoying life. That is lovely to hear 👍🤗x
In fairness ours are not destructive with their toys but when Brodie was a teenager he actually chewed a huge hole in the plasterboard on the wall. Yes Dylan is our miracle boy and as long as he is happy and able to enjoy his life we are blessed to have him. In a world full of sadness, ill health, wats and injustice there are dogs, nature’s joy ❤️🐶🐶xx
Jag is not destructive as such it’s just now and then and only his own toys , maybe excuse for new ones, which he has a stock pile of as everyone buys him toys at birthdays and Xmas as a member of the family.I second that , truly a joy 🙏😍x
I have it too CP 🤗 you're not mad!!!
I get really agitated n twitchy left side usually..someone did tell me that they've been told it's small fibre neuropathy (sfn)...it's like fireworks going off in my body!! I describe it as I'm a sparkler..with those little lights sparking off.
It's horrible n I usually take tramadol in order to calm it down.
😽😽Xx
Really? Now that is interesting Kat. I wonder what type of doctor acknowledged and diagnosed it? Thank you for the analogy of a sparkler, I am far more an agitated squib lol 🧨
Sparkler! That’s a great description. Maybe we should put together all our ways of describing it and send it onto the rheumys so they can understand better. So hard to explain isn’t it? I got very strange looks when I explained to a whole round!
X
Yes Melba 🤗we should..when u described it as fizzy lemonade in your veins..that's exactly how it feels!!
Crackle..Sparkle..Fizz Fizz!! 🎆😽😽Xx
I haven't told any docs about it coz it's so hard to explain!!
Sorry to hear you are not well. Wish i could offer you some help. The doctors i go to have a patients forum where doctors and patients meet once a month and they discuss how to make the practice better. Do you have anything like that? If you do maybe think about joining, if not maybe you suggest starting one, at least you will be able to give them your input, and it won’t just be a 10 minute slot where you have to explain what’s wrong. Take care hope you feel better soon
Thank you so much. No nothing like that that I know of near me. I guess there will not be for the foreseeable future given the virus which is totally understandable xx
Ok, so once this coronavirus is over maybe suggest it to your practice. Reading some of the horror stories on here about gp’s is quite shocking and i don’t mean to rub salt in the wound but here although they say it's a 10 minute slot they are not constantly trying to get you out. For the moment you could send a letter to your gp asking if they would be open to a patients forum , if they say yes you could be gathering information as to what you and all other patients would like from your gp ‘s.
Hi I totally agree with everything you have said . I am the same just as you described it .. comes from nowhere hits the back of your neck first . Then you feel sick . I was the same last night and I have a cold this morning .. you are not alone ,. I just put down to the wonderful lupus . Because that’s what the doctors put it down to ... hope this helps ..
Thanks Barb. I am never sick but the agitation is awful. I slept for 12 hours last night. The relief of knowing I am not alone in this really helps xx
Cecily - YES!! Thanks for posting this, I get exactly the same.
Agitation describes it very well. It’s not a mental anxiety rather a physical one? I get it before a flare; a feeling like being very stressed, a bit panicky, heart rate increases, insomnia, can’t relax or feel settled.
I initially thought maybe it was those symptoms that were then making me flare and I needed to try and ‘relax’ to stop them but have realised over the years that it’s a clear sign of a flare coming for me. I now know there’s a certain pattern of symptoms that almost always happens including ulcers in the same place, bleeding blood vessels on my legs, then the agitation, then more brain/ neuro problems.
I think it might be our nervous systems, especially the autonomic nervous system (including your flight or fight mechanism)? I’ve been assessed by the national neurology centre and there are various parts of my autonomic system that are involved.
Completely understand why you feel it’s difficult to tell the doctors as they may then think it’s anxiety, especially after your awful ‘hysteria’ experience. I think many of us keep these symptoms quiet then the doctors don’t know how many actually get them?
One of the most definite signs for me of a flare starting is the feeling you described so well and one I always describe as feeling like I have ‘lemonade in my veins’. So hard to describe, like a fizzy, buzzy feeling throughout my body. I’ve tried hard to explain it to so many different doctors and I think it’s a key sign/ symptom. But almost all of them don’t take any notice and just give me a perplexed look and move onto the rashes or what they consider more severe neuro problems. I’ve been in hospital lots of times and explained it to lots of doctors but none of them have even written it on my notes. I find this annoying because I think it’s an important symptom!
I have a very good rheumy and autonomic neuro but they both just shrug and say they don’t know (they say that a lot which I much prefer to those that pretend to know when they clearly don’t!)
But I now have confidence in my own body after it coming before a flare so many times and sometimes up my steroids when I feel it (with my rheumys permission - we have settled on both describing it as ‘feel weird’!). I wrote to one of the top lupus specialist who I’d seen to ask her what that agitated fizzy feeling was and she said that she was sure, along with my other symptoms, it was the lupus active in my nervous system.
I can’t answer as to what it definitely means for you, but it’s definitely not flipping hysteria (oh that makes me so cross you got told that, can’t imagine how damaging to you in trusting telling them these symptoms now). I think we all learn over time our own pattern of symptoms and what they mean and we just need to teach our doctors what they mean and what they should look out for in us and others?
Xx
This is so helpful Melba1. Can totally relate to the fizzing, buzzing thing. I've tried to describe it as if I have tinnitus but in my whole body! I'm quite new to this whole melarky so haven't discussed possibility of nervous system involvement with any docs yet but definitely have lots of things that would make sense, twitchy muscles, tingling extremities etc. Frustrating that so many docs don't seem to recognize it. I'll definitely ask about it at my next appointment. X
Could you be describing paresthesias? Do your hands and feet feel like they are falling asleep?
Totally agree with Melba1 that these things are often not diagnosed specifically - can’t be - but when doctors get to know you, it helps to recognize a flare.
I think I know that buzzing too. Once I thought I was having a stroke. It was like « total body paresthesia »
It is all scary, I know.
😍k
Mine definitely is not paresthesia, just the opposite, I jangle, cannot keep still, like all my insides are being stimulated simultaneously. My restless legs go into overdrive and I pace back and fore. When I try to sleep it is almost impossible and when I do drop off I wake with a start and find I have only been asleep for minutes. I do have the parasthesia in my legs on and off and a neurologist recognised that at least. Xx
They may related, no? Ask your doctor.
It’s weird isn’t it Kay? I think many get parasthesia, from SFN etc but often it’s a more permanent form that starts in hands and feet?
But then some of us get a temporary form that can be legs and arms but also whole body? I get two types, one like you say that feels like certain limbs have gone to sleep, then pins and needles type feeling but for much longer than if you’ve just sat on your foot. Especially at night. Then the whole body fizzing. Both seem to mean a neuro-flare is coming.
Is that what you get?
It’s interesting that those of us with the autonomic dysfunction get it. I can never work out whether mine is more from central nervous system (as in my brain just thinking I’m having odd sensations because it’s inflamed or blood brain barrier compromised) or autonomic nervous system. I think probably more autonomic for those symptoms?
Although I know a lot of rheumys put down every strange sensation down to fibromyalgia. None have tried that with me but it does make some people reticent to report symptoms that they feel are part of the lupus for them.
I don’t find it scary anymore but hate the arrival of the ‘fizzing’ because I know it usually means that my brain is about to take a holiday, sometimes a long one and not usually to a nice location! 😱🤣
X
Yes, very weird! My autonomic symptoms are nuts too - am hyper-responsive to chemicals, heat, humidity, temperature change.
That would be hard to distinguish for you, right? You seem to be describing peripheral nervous system stuff. But autonomic dysfunction also causes a strange « light-headedness. »
It drove me crazy until they diagnosed the autonomic dysfunction because that particular light-headedness was unfamiliar. I used to describe it as feeling etherized. Do you feel anything like that?
I would love take our communication to my stroke doctor. She is a sweetheart. But you should see her face if I mention anything more in the autoimmune category. She just cannot believe how complicated we are and claims she is not smart enough for us.
What is your treatment for neuro flare? Do you get cerebritis?
Xk
I often get parathesia too but as others describe, this whole body buzzing/ringing thing is different. Definitely a big warning sign for me. But as to whether my new team will accept it as something real I'm about to find out! I love that you sang the noise to your neurologist 😁
Just because they don’t comment doesn’t mean they don’t accept it. We have to be careful not to interpret their behavior - and just ask. I could have said my rheumatologist was dismissing my weird neuro symptoms all those years but when he finally said I had low level CNS involvement, I realized he wasn’t at all.
You must ask directly. If they are not sure, they will say that. They could also say those symptoms are common and likely from “.. “ and we can try to treat with “... “
The most important thing is to let your new doctors get to know you. They have to get a feel for your illness just like mothers get to know their kids’ nuanced behavior. 😅 You will develop your own “code” after a while.
I once read that doctors are taught it is more important to know your patient than to know the disease. Wow - in what diseases is this more important than systemic autoimmune disease?!!
You are in a new world now that you have been properly diagnosed by the lupus center. 😁
There are no good studies with neurological lupus. So it is all expert opinion and physician judgement.
I have thought for a while you need a neuro consult. I think the rheumatologist thought that, too, right?
❤️k
Was that response meant for me Kay?
No, Salzer. Sorry. Did it go to you?
It just came up on my emails..I am easily confused 😂
My usual state 😅
Tinnitus in your whole body is a great description!
Neuro involvement in lupus is so under researched and misunderstood currently that I don’t think we’ll get many clear explanations yet - but just knowing so many of us experience these systems must mean that something is happening, we just need science to catch up with our bodies!
Good luck with explaining it to your rheumy. Please let us know if you get an explanation!
X
Well-put! I don’t know if they could ever label my symptoms in a research study. In my chart it actually says « k says her head feels weird. » One time I couldn’t describe the noises in my head to my neurologist so I just imitated the noise. 😂
We are quite a bunch, right?
The neuroinflammation area seems to be taking off. Lupus is considered sort of the prototype.
Xk
Thank you so much Melba. I cannot stress enough what a huge relief it is to have so many acknowledge these strange feelings. Not that I would wish them on anyone.From my experience with Rheumatologists lately if I told them they would almost certainly confirm their assessment of my hysteria so until I find a doctor that I trust I will keep it to myself xx
That is terrible, Cecily. Good doctors know to listen to their patients and trust them to know what they are feeling.
Of course, they may not always know what the symptom is or blood work and other tests may not indicate it is necessary to treat. But these symptoms should be acknowledged. My rheumatologist used to refer to them as « constitutional. » Some are now considered neurological. But the whole anti phospholipid antibody syndrome was just being studied. I believe you are aPL positive?
Get to know the new rheumatologist and ask him if he thinks your symptoms are aPL related.
Xk
My area of Wales is the highest in terms of spread of COVID-19 so I suspect I will not be seeing him for a long time. I am unsure whether he is permanent either as it was at a new hospital to me. All I can do at the moment is just get through it Thank you so much for the advice xx
I so hope you find a doctor you trust soon but for now, certainly know it’s not just you and maybe keep a diary of all these symptoms? So you can see if they definitely come before a flare and when you do find one you trust, you can work together to work it all out?
If it’s any comfort, once my lupus was better controlled (it did take really strong drugs to do that) all the fizzing, buzzing neuro issues completely got better 🙂 I know it will happen again but this time I’m completely trusting what my body is saying.
When I was last in hospital I had a ward round with 12 doctors. They all spent ages looking at and discussing the rash on my legs, ‘had it got worse than the day before because that would be a bad sign and they’d need to up drugs’, even measuring it to see if worsened overnight. BUT when I told them about the whole body fizzing and how i thought that was much more a ‘bad sign’ for Me than a rash that didn’t bother me at all, they all completely ignored me and changed the subject! 🙄
I think these invisible neurological symptoms are so much harder for us and the doctors because they’re so hard for us to describe and hard for them to understand (or believe sometimes).
Xx
Yes it is far easier to treat something you can see. I appreciate how hard it is for them to know how we feel or to do anything about it. I used to get frustrated, angry and distressed when they tried to palm me off so now I just do not tell them. The sad thing is there is probably nothing they can do to stop it but acknowledging that it is real and not mental anxiety would be a huge help for me personally xx
Me too CP. Thank you so much for asking this question. What a relief for us to know there are lots of us buzzing, clanking, fizzing out there. I'm actually experiencing it at the minute myself and it's horrible. As is wondering what to do about it in these crazy times. Hope you are doing ok. S
Haha .. buzzing, clanking, fizzing! Many neuro symptoms are weird.
I have had them for thirty-five years. It makes it easier to know others experience similar. One important thing is to get clarification on when to call 911 (or the UK equivalent) and when to go back to knitting. That is helpful. I was sent to the emergency room about a year ago - doctor picked up on the phone, I think, that I was not so coherent. Again, gotta know your patient.
😍k
In my own experience and anecdotal comments from my research for my book, feverish symptoms (clamminess) and "the shakes" are indicative physical signs of a lupus flare (mini or otherwise) . You are not alone. With my very best regards, Lily
Thank you Lily. My shakes are not visible to anyone it is more a feeling inside but the twitching and inability to keep still and cold sweats are very obvious xx
Yes! This is what happens before a flare. It's a really uncomfortable and as you say "agitated" feeling. I also get this when I eat things I am intolerant to such as wheat, dairy and sugar. Thanks for this!
Thank you too. I cannot say I have it with foods. I made a diary thinking it was food related but there was never any correlation for me. At least you have identified factors that affect you and can avoid them xx
Yes the press are bumping up the panic but I do think anyone going out and not adhering to the guidelines is idiotic yet I see them through my window and think how foolish they are. I feel so very sorry and angry for those self employed who have no choice to go to work to feed their families. It is truly heartbreaking. You keep safe too Lou xxx
Thanks Lou, you too xx
Hi Cecily, I think when you feel like that it's your body responding to whatever illness that's already in your system and ready to rear it's ugly head. I don't think your peculiar.
Thank you although my hubby might disagree lol 😉
Me too! Usually for me it’s at nighttime when Im trying to sleep. Often alongside my restless legs but more recently noticed a link between this and my gastro problems which often get me up during the night. If I feel agitated now I can generally predict a rough night coming....
High risk letter
Do any of you have PNH? Peripheral Nerve Hyperexcitability (constant twitching) which I am told can be linked to autoimmune diseases...
hydroxychloroquine and nerves
Laura & I
