Hi everyone - wondering if this is something others here experience - or whether it's just me?
I frequently have a weird internal buzzy feeling to the point where I expect to actually be able to see a visible tremor in my hands - but it doesn't show. The feeling runs through my whole body - arms, trunk and legs - and I probably have it 3 or 4 days out of 7.
Today though it's at its strongest and I feel just dreadful with it - like my body is craving something extra. Last night over a few hours I felt like my whole system was shutting down or losing something as gradually all my usual pains seemed to manifest at once and really built up to horrendous levels mostly impacting through my tendons (if that makes sense?) and this morning I feel like I need someone to pull on my hands and stretch out my wrists to see if they'll click - a bit like the old dolls with arms and legs on elastic 🤷 my intercostal rib pain is back and this horrible electrical buzz is really surging through me but my pulse is steady and only slightly higher than normal.
So - back to my question - does anyone else get this weird internal feeling?
Thanks
Written by
Wispymisty
To view profiles and participate in discussions please or .
Dear Wispymisty, I do not get these but have empathy for the wondering and concern. (I get various odd sensations, e.g., feeling of needle pricks/multiple ant bites, numb spots, burning feet, shivers and chilblains even with heated bedwarmer and 4 layers on(!), a sense of trembling in my head with a gurgling sensation in my head, etc, but I see these are not the same as you have described.) However, I want to acknowledge your message and your concern. And frustration. And the likelihood you will share this with a dr and it will "stump" him/her.
I hope to add some perspective. Please disregard if it doesn't seem helpful. Since I have been at this [coping with connective tissue disease and Fibromyalgia (plus 10 other diagnoses) for 20+ years, plus being on sites like this] it seems to me that we often have many symptoms dr's don't know source of and who haven't had many, if any, patients share the same. Therefore we can worry or even wonder if there is something much worse happening in our bodies. Of course you will want to share these with your dr at next appointment to hopefully get reassurance the source isn't something scary which needs treatment (maybe even say it that way). But I hope it helps a bit to know that often we seem to have odd functions (based on having read a lot on here over the years and in my own experience) that feel rubbish, yet do not end up in diagnosis of something terrible. (Yes, the symptoms feel terrible but I mean to say, in my experience of dozens of such appointments over the years where I have unintentionally stumped the doctor, there is nothing life threatening. Also it is likely the symptoms may not be prone to worsening.) For me the hardest part of leaving appt's with little "help", i.e., treatment, is dealing with my grief at more unanswered questions and to not make it a catastrophe in my head, or build it up to unbearable. I have to remember the medical staff have ruled out many possibilities. For me, at these times I have come to recognise that to manage my anxiety and manage my thoughts is essential; otherwise the stress can worsen my overall health.
I hope this might offer a perspective in your distress and also that others reply to your post with their perspectives and overall you feel some easing of your mind and a plan to pursue as you get your concerns explored.
Thanks for your reply harmony2 🙂I know exactly what you mean, I was diagnosed with fibromyalgia myself in 2010 and there are often symptoms that are unanswerable and even I mostly just shrug my shoulders and move on.
In this case though it has been such a distressing change that I really wondered if anyone else had such a similar 'crash' I can't think of any other word for it really. I actually have a GP appointment next week but was really close to contacting them today as it's just hit me so hard. I think if I'm experiencing the same tomorrow I shall have to.
We definitely have many unusual symptoms though don't we and often stump the doctors!
Wispymisty Thanks for your gracious reply. I woke in the night (one of many times) and I thought, "oh, ugh. I should not have said all that. It could sound I was dismissing the terrible disturbance new symptoms can be...". I am grateful you don't sound offended.
It is also good others who can relate have replied. I hope it gives some comfort of not journeying alone. Interesting to read what you and others talk about what may bring it on. It seems such seemingly "ordinary" activities (in this case, such as having a conversation or being outside in the sun or shade but on a warm day) can trigger a worsening of symptoms for most of us. Sigh. : ( Feeling empathy with this.
I am glad you have an appointment soon so you can discuss it. I pray it is fruitful in some way (or multiple ways).
Thanks for your reply StriatedCaracaraI wonder if it is part of a flare, previously my flares have been pain and fatigue issues with joint swelling too.
Interesting what you say about carbohydrates helping, I do try to work out what my body's asking for and replace it, I do keep note of how my body is behaving but still trying to work out any triggers I've missed. Always a work in progress.
Thanks again and thank you for the link to your earlier post, I'd missed it when trying to search this morning.
Wispymisty, I was so pleased to see your post - which I keep checking too. This affects me badly some days out the blue, particularly when I get up and is scary.
I get this quite often too. It can be a bit scary, but I’ve had it for many years now
I agree with SC that it might be related to carbohydrates regulation as eating something sweet can alleviate the symptoms. I have EDS (not lupus) and I’ve also been dx’d with autonomic nervous system dysfunction.
You’re not alone! So please reach out to us if we can help in any way Xxx
Thanks Megs53 appreciate your reply. Good to know I'm not alone, although as you say it's a bit scary so I wouldn't really wish it on anyone else, but it makes me feel that I can reasonably wait until my appointment next week to mention it to the GP.
There are reports in the literature that some virus can live in the nervous system for ever. Surely this deserves research, but I can’t imagine it’ll happen any time soon 🥲🥲🥲
interesting too especially re fibromyalgia and especially many people being diagnosed fibro first and people having fibro added to diagnosis later. this is all interesting and im sure one day there will be a link. My latest diagnosis is fibromyalgia to the extent of certain symptoms and although many symptoms not even addressed as they insist on looking back to 2018 still, I am told they cannot give a unifying diagnosis for other symptoms.
Im pretty sure a decent rheumy worth his salt would know.
I agree megs this surely must deserve research 🤔🤗xx
interesting you say this megs .my journey was started long before covid but I did have a four week illness, that knocked me for six and then came a lot of my heightened problems . I also felt ill from a flu jab and wondered what part that played years ago. I think viral infections have a lot to answer for without covid just in general and I had years of going to gp with symptoms and being told its a viral infection (I used to get so frustrated and think how many viral infections can you get). so viral infections 🤷♀️ or being open to get viral infections🤷♀️ Also vaccinations, im interested to know when I had my flu vaccination that made me ill, maybe I should find out as there has also been vaccinations ive read that have made people ill especially one in 2020?🤷♀️
I know vaccinations are there to help but I often wonder about them and what's in them 🤔 as well as viral infections.
Hi I have it its horrible I have Rheumatoid Arthritis and Raynauds I take hydroxychloroquine are you on meds it's being dismissed by medics was on high dose. Only just reduced by have had blood tests checked thyroid and vitamins levels.
Hi welsh12 - it's awful isn't it 😔 I have reynauds too, the only meds I am currently on are painkillers and a very low dose BP one, my last blood test did show low Vit D and I do have B12 jabs. My thyroid was checked thoroughly a couple of years ago and my recent test showed it just in level. Still feeling it this morning although slightly less intense but I've woken up with a stye now 🙄 so need to get that sorted....
hi. Yes I used to get this internal shaking symptom but no longer do - or if I do still then I’ve ceased to notice as much to it over the years as with tinnitus. I think people who’ve suggested that it relates to a disregulated autonomic nervous system are right for most cases. I have Systemic Sclerosis, Sjogrens and hypermobile spectrum disorder plus hypothyroidism and cervical and lumbar osteoarthritis. Secondary to this package I have severe gastroparesis and bowel dysmotility - awaiting stoma surgery in June. The digestive problems are how my systemic sclerosis started along with Raynaud’s. The Sjogren’s doesn’t help either now the spinal disc disease. But I think the inner shakes were most likely related to raised blood glucose and evolving Gastroparesis since they have mostly gone now since I’ve been treated systemically for my autoimmune diseases.
I was tried on Propranolol for a while but it made no difference at all. You may want to get your diagnosis of Fibromyalgia reviewed bearing this new symptom in mind.
Thank you for your reply OldTed60I have a GP appointment next week with the aim of asking for a Rheumatology referral in the hope they will seriously review my current diagnosis as I'm sure there is more going on.
I've also got osteoarthritis in my lumbar and cervical regions and have chronic constipation although thankfully gastroparesis was ruled out in my case.
I'm thinking after reading through other people's experiences in their replies - and waking up with a stye this morning - that it is very likely related to my autonomic system.
They will likely run bloods for inflammation, FBC and hopefully ANA and then only decide whether to refer you on this basis- but good to ask. Best of luck 🤞🏻😊
My ANA is negative but apparently with Sjogrens it can be and they check on the ENA - the local lab wouldn't even check ENA because of the ANA result but I'm hoping the GP might be able to request it or at least do my referral based on my symptoms
Yes it can be negative in Sjogren’s. Mine is always mildly positive but they only wanted to lip biopsy me when it was highly positive with history of seronegative RA. I’m now very seropositive for systemic sclerosis but it took 12 years post onset to get this fully diagnosed last year. Anyway good luck to you
I dont like the bloods for inflammation ,I have had high ck with minimal inflammation physically and normal with high physical inflammation,.I recently read a good article re Ana and end etc and whilst good predictors id love to see the clinicians who wrote the article as re bloods it is much deeper and they said they would be interested in seeing those with negative bloods and clinical symptoms. It helped my mind in that I have for years been undiagnosed or not interested in as negative bloods yet my symptoms and clinical presentation leave me looking and feeling the same as someone who may have positive Ana. There are reasons these things may be negative in some and also in ways tested. when I read this and look back at progression of symptoms and count how many times ive been told ill be sent somewhere if something shows in bloods or will be sent to mctd department if bloods show then im sick to the stomach.
I don’t think the standard markers do justice to the fact that each of us has our own unique genome sequencing and, much like foods, no one rule will ever fit all. For me my CRP and ESR have been excellent indicators of disease activity but compliments and other markers haven’t. This means I’ve been taken seriously enough by GPs and, despite 12 years until right diagnoses - I wasn’t ignored as you’ve been. So I would say to doctors that your bloods don’t represent you well for whstever reason. It’s possible for instance that you have low immunoglobulins so are unable to mount a strong immune response to inflammation in your blood. This is the point of the term seronegative after all! It amazes me how often doctors fail patients by not acknowledging this. X
yes I agree x I remember gp sending me back to rheumy straight after discharged as forearm and thigh went red and solid, rheumy looked and said this isn't fibro and sent me for scan. said everything on scan was normal and with it still there said its fibromyalgia.(after saying it wasn't. My then husband said so all these tests are ok can they be seronegative, can she have something going on not showing and she simply stated yes. there was an awkward moment as she didnt speak further and to be honest neither did we just left as it was awkward. now years of progression im at a loss. funny enough I have lost over an inch from wrist of that forearm and two inches from that thigh. Unless there can be another answer my skin has resembled anetoderma, obviously I dont know just years of trying to research why im ill, but I can find nothing else to explain the indentations which appear as pitting oedema but of own accord. my gp just said strange.🤷♀️ honestly its truly amazing how doctors fail patients.
I also have this sensation, mostly in my left foot and it comes up into my left leg. I get like a pulsating in my left groin. I've had it since Sept 2023 it was originally intermittent but has now become a constant. I wake up and feel like my entire body is juddering sometimes like I'm on a vibrating plate.
I describe mine as a smart watch or phone vibrating that you want to turn off but simply can't. I've not found anything as yet that stops it or improves it.
I've seen neurology all scans and tests are clear, so believe it's something to do with lupus but it's hard to know.
I would discuss it at your next rheumatology appointment
I'll let you know ow of I find anything that turns it off! 😀
Thanks Sunshine634 - hopefully you can find something! It's awful isn't it? Mine is still happening this morning so I'm wondering if it's going to be a new constant - whilst hoping it isn't.Aiming to get a rheumatology referral next week when I see the GP 🤞
Thanks for your reply - I am on the 12 weekly B12 injections and my last blood test (2 months ago) showed an acceptable level - although it was only a week after my last jab - I do think my folate was low though I'll check back - I know my Vit D was low too.Glad to know I'm not alone in experiencing this although I wouldn't wish it on anyone else either.
I have low vit D and vit B12 (positive gastric parietal cell antibodies/PA). I get vitB12 jabs every 10w but I don’t think it alleviates the trembles 🤷♀️
What is interesting is there a lot of posts on this forum but no resolution we have to rule stuff out I had to be assertive to get vit levels done they were fine rheumatology sarcasm said oh look lots of vit d in your blood
We really do have to fight for it don't we 😔 I'm sure my fibromyalgia diagnosis (although helpful at the time) has ruled out my symptoms being seriously considered at times. One GP actually said to me there was no point referring me to rheumatology as they'd see me and discharge me and I'd have gotten my hopes up for nothing (!) that was a few years ago now and they did actually end up referring me when the gastroenterologist more or less ordered them too! But it turned out the GP was right - seen and discharged.
That said when I see the GP next week I'm asking to be referred again as I'm sure I've got Sjogrens or another UCTD and I'm at the point now I'm ready to push for proper answers.
Yes do update here as sometimes feel talking and being ignored rheumatology bound to gp and via versus gp told me when I said I think maybe sign effects from meds said well you need permission from rheumatology to come off them!
Yes I experience something similar. It feels like a kind of surging,rushy, internal agitation. It's hard to describe. It seems to appear suddenly and lasts for an hour or two then goes. It's interesting that others mention that sugar/carbs help. On reflection I think this might help me too. I've also found that sipping water helps sometimes.I've got cutaneous lupus, rheumatologist and dermatologist seem satisfied at the moment that it's not systemic. I do have a rash that is covering most of me at the moment but worse on sun exposed areas ie back, chest, shoulders arms. I'm not sure if this worsens when I have these strange surge feelings.
I'm glad you raised this issue because when I've mentioned it to either of the 2 consultants or my GP they have looked at me blankly!
Yes, internal agitation is a good way to describe it Biscay. It seems a few others get similar issues too but I think most GPs would respond the same way as yours
Hi I posted something similar some 5 years ago. I still suffer from this now. My wonderful doctors have given views, from Vagus nerve possible dysfunction, thyroid (recently checked, all fine).
I would love to know what causes this horrible shivers in me, it is very powerful have to say, starts from neck down, in a slow, but shivery way, and always wakes me up.
Hello Wispymisty - so sorry you get this. I have what you describe (very well, and very clearly.. almost exact) day and night for about a decade now.. some days/nights not as bad as others. It's part of my (our) many vile symptoms... My current Rheumy is seemingly at a loss - about much of it.. Oh for the days of my previous extremely specialised and experienced Rheumatologist - although he did get my feet tested for neuropathy about 7yrs ago. I'm much worse now but no point talking about it as she has no clues... so no further tests. I usually take a codeine, sometimes also a quinine if it involves the utterly severe feet and shins/lower legs cramp and restless leg/arms/hands/feet and stretch out as much as I'm able at that time.. and lots of water... always.
I know dehydration doesn't help.. although, if you're like me, the body isn't really able to absorb.. they say.. and due to Sjogrens. Actually just remembered.. in the middle of the night when it's so so bad and I'm not even aware I'm doing it, I go off and get a small glass of pineapple juice half cut with water... I used to have a couple of crisps too I seem to remember! My mind/bod obviously feels I need this. Electrolytes?
Oh - and do you have an Apple Watch or similar? I find it is also linked to my low blood oxygen - anything from 79% to 89% in the night.. (and this is due to my new, after probably 60 yrs of it) tested and diagnosed with mod-severe sleep apneoa..ie my throat closes pretty much all the time.. at night of course. Am hoping the CPAP machine I'm about to trial might help! So, do you test your blood oxygen and also your blood pressure and heart rhythm when these things happen..? Maybe your blood sugar is low too?
Oh and I HAVE TO do some yoga every single day (unless had an op or in a very dire flare) - truly essential, I dread to think what I would be like if I didn't.. I just do my version of the hatha yoga positions.. and only a few if that's all I can do. If you are feeling you need someone to pull your arms as you described etc, you body is asking you to do that.. stretch..... even armchair versions are better than nothing.. it truly helps the system..
Anyway, hoping all that helps.. and also hoping you get some answers.... and for these awful symptoms to rapidly reduce.
Dysautonomia Project I found explained things a bit, like as you say more fluid and salt. I get marmite craving and a sort of salt thirst (where need salty substance and fluid at same time)
Under first link in post, if scroll down along way to 'Treating dysautonomia):
Ooh that sounds interesting as I do at times crave salty things and marmite. I've only recently come across dysautonomia and find it resonates with me and a lot of my symptoms.
Thanks so much… makes sense as was living with bag of crisps by the bed for couple of years til i sorted out better/healthier options! Wld wake up in middle of night and was really desperate for them.. i knew it was about the salt.. but we have enough in food naturally anyway so was confused . Elle Mcpherson takes salted water pre bed time.. if it’s good enough for her!! ;). I’m salt intolerant apparently (had a DNA test through Nutrigenix or something which was fascinatingly eye opening).. Anyway will read the link - thanks so much. All the best to you.
yep! Was a full tick situation! But i have so many health conditions that bring many of these symptoms on.. but not the blood pressure and oxygen fluctuations, and just the strange awful severity of the lot of them all at once at times.. Might discuss with docs some time but they’re all pretty overwhelmed with me and the systemic nightmare that is multiple autoimmune along with all my organs being up the spout anyway. Thanks v much for passing that on.. will be v useful to a vast number on here. All the best. D
Thank you for your reply DJK99 I'm wondering if this buzzy feeling is going to become part of my regular symptoms as it's still here today, although thankfully less intense.
I have been checking my BP twice daily this last week (to hand in to the surgery) and because I often get a burst of palpitations I've just bought a finger clip pulse oximeter to keep an eye on that my daytime saturation levels are around 94-95% and my BP has mostly been fine except when I had a higher pain day.
I am limited with what exercise/stretching I can do but try to do some most days - I've not tried yoga (although I have thought about it) I shall have to see if I can find any suggestions for armchair stretches.
well even stretching your legs out whilst sitting down, ditto your arms and wrists… and lean to the side etc.. you’d be amazed what we can do.. I’m limited too but generally, mega painful as it is (with or without doing it, I know I must try). I am sure you’ll find something onbthe web. Yes my Blood oxygen is around 89- 95 in the day.. and have told my gp but he seems fine about that.. i wonder what is happening at night for you however… my apple watch has changed my understanding of my health in so many ways… I was able to get one due to some cash coming in (sad reason) and it’s so amazingly helpful.. revelatory! I do hope things improve and that my info helped a little. All the best to you x
Hi, yes what you describe is similar. I've had Long Covid for over three years (was completely healthy prior to this) and I get this strange internal shuddering first thing in the morning as I'm waking. Its always a sign of the kind of day I'm going to have and correlates with other symptoms, including, severe muscular and joint aches, face rashes, chronic fatigue, headaches and bruising. I can usually bring it on if I over do my daily activity or have another illness such as a UTI.
I'm under the UCLH long covid clinic and know that many other LC patients have similar experiences of morning shuddering. I was interested to read that low blood sugar can trigger this which makes sense to me given my experience first thing in the mornings. I find strict daily pacing, good nutrition, sleep hygiene and regular breaks help me.
I'm also under a rheumatologist as my symptoms are very similar to those of Lupus and RA but all my bloods have come back negative so expect I'll be discharged at my next appointment! I am currently on 200mg hydroxychloroquine and HRT both of which have helped symptoms(prednisolone has also helped) but definitely not cured them.
Interestingly, I read that Yale have recently published research that demonstrates a huge increase in risk of getting an autoimmune disorder post covid infection and my rheumatologist has said she's seen a large increase in referrals. In my and my family's experience getting Covid is definitely something we should all want to avoid!
Good luck with it, I hope you get some answers and thanks for asking this question.
Thanks for your reply Pengiun - sorry to hear you have this internal shuddering too.I think there certainly seems to be a lot of similarities between LC and post viral fatigue syndrome so the Yale research makes sense
I hope you don't get discharged by rheumatology and that you can find something that can relieve your symptoms
Another article: Autoimmunity in Long covid and POTS
My POTS started in 2016, in 2019 I had knee pain and fevers all summer, in March 2020 covid infection, kidney symptoms followed then photosensitivity and eye problems.
Following strong positive ANA, was told everything in my head by local NHS rheumatologist Autumn 2021.
Went private for diagnosis of UCTD that winter.
Symptoms then improved a few months in on hydroxycloroquine and now further by mepacrine (unlicensed and having to buy myself as local NHS don't prescribe it), twice been on steroid.
Think the system is playing catch up. Truth coming light now..
For me I had started on CTD journey pre-covid but covid infection, and dare I say it, possibly AZ vaccination seemed to impact. It was following AZ I got first malar rashes, (also I got SOB and headaches leaning over but took aspirin..even though advice was not to).
So often finding I need to find my own way as can't rely on what been told, or services available.
University College Hospital London service looks good. Wondering if they take referrals from outside North London. Also, if there are long covid autoimmunity research projects where patients can get involved here in the UK.
intresting what you say about AZ vaccination. It definitely exacerbated my many symptoms including headaches. I had frozen left shoulder and hair loss as a direct result of vaccine still have significant issues with left shoulder now. UClH are pretty good you will need a referral from your GP not sure if the pathways allow referrals outside North London but worth asking. Good luck. Worth to hear you’ve had such a long and difficult journey with your treatment, definitely necessary to become your own well informed advocate!
this is very interesting penguin I too was seen by rheumatology but discharged and my symptoms are similar to lupus and others but my bloods are negative. my symptoms reared badly after hydroxychloroquine stopped. I was also given prednisolone last year which helped but not cured, a high dose for a week. may I ask how long you were on steroids.would you mind me asking of your facial rashes and eye problems? Ive never had covid that im aware of but I guess not everyone knows or would have known early days. my dad has been unwell since covid and blames the vaccinations but he was ill just before covid came to light and I swear it was covid but was just before they announced it but symptoms same and very inwell.I dont see how a certain date can be put directly on it especially as people like my dad who would never go to hospital or docs but take his chances (thats how he is ) and many people may have just thought they had bad flu or something as it affects differently. I was also very ill for 4 weeks before my progression 🤔
Striatedcaracara makes some valid points and as she my journey began before covid but could covid or vaccinations have had impact 🤔
we need the truth and hope more comes to light , makes you wonder why sick people are being hit by the government too with more people getting sick 🤔
I hope you do not get discharged without any answers ,and dont think anyone with ongoing symptoms should be. There are so many questions with all these sorts of symptoms, even autoimmune without showing in bloods and all related problems. such an interesting subject .
Interestingly I was referred to uh in Bristol , waited 2 years then told no it wasn't happening. I wonder why? I wonder if they were running a long covid clinic .🤔
Hi I had covid last year at the age of 61 it triggered RA and Raynauds and all the trembling etc. I take hydroxychloroquine was on 400mg but reduced as not convinced this wasn't producing side effects despite medics ignoring this because its working in reducing joint pain and stiffness
sorry wispy misty, I can only explain mine but can relate to weird feelings. I have weird trembling sensations in body but mainly in legs, also its mainly on awakening and a hot flush all through my body,I often check if the dog is there with me to make sure hes not shaking the bed or if its coming from me.weird tight feeling either side of middle spine and annoying pins and needles in fingers even when using hands which id expect if not using them 🤷♀️ a lot of jerking when falling asleep.I feel for you as the weird internal feelings we get and that cannot be answered are worrying. I used to get a horrible feeling under my buttock like a ballon being inflated and when it reached its crescendo then followed by deflating balloon feeling. its rare nowadays but my daughter has noticed dented scarring there now so maybe that is to do with the feeling. all id say is make a note of it all, not that there will always be answers wether due to interest in them or in way of answer but maybe will be useful in future even if for yourself and can relate it to a reason. I understand how scary it is , and it sets your mind off questioning things. I think it helps to talk so glad you posted take care 🤗
Thanks for your reply stiff19 it's interesting to hear of your experiences. I also get pins and needles which sometimes I feel is down to the discs in my neck, but not always. I've not had anything similar to your 'balloon' feeling though, that does sound very unusual, especially with the dented scarring you mention.I do feel a lot better by the number of replies there have been but will still be sure to mention it at my GP appointment.
yes we all experience different things even if we have the same so its worth your keeping a diary . I think it throws them when you mention weird things, but its getting their interest as many just like you to fit in a box and dont take other things into consideration. Im glad the replies you've had make you feel better and do make sure you mention it to your gp.I keep all my pics and diaries in hope one day a doc will be interested. I can relate to other things said here too been mentioned and its always good when a post opens up discussions as we see then sometimes we are not alone and you can also get understanding which is a comfort and it also helps others who maybe fear to mention ,so well done you and I hope you feel better and at least somewhat less worried ,though it is understandable to fear the unknown 🤗
Wow. What a lot of replies. I have Lupus and Raynauds. I also get this buzzing, usually in the morning with hot sweats . Tinnitus at the same time. Amazed to hear so many others get it !
I sort of associate mine with hunger pre breakfast. It was worse last year post Covid but much less now. I take magnesium for palpitations and am now on BP meds. I also take azathioprine, low dose steroid and hydroxycholoquin, propranolol.
Vagus nerve causes were mentioned by me to Dr, who sort of said ho hum maybe. I also suffer from IBS.
Sorry to hear so many of you suffer too, but a bit of relief to know it's not just me !
Hi Potatoheat - thanks for your reply.I have Reynauds and IBS too, but no formal rheumatological diagnosis other than fibromyalgia.....yet(!)
It's interesting how many replies there have been, quite a few mentioning it maybe being related to blood sugars or hunger, although I don't think that's quite the case for myself, but I'll keep an eye on when it's at its worst to see if I've missed a link.
My symptoms are exactly the same as yours do you fine any of the medication works hunger I think appears to be linked with mine but not always my symptoms being dismissed at the moment was given propranolol low dose to fob me off but doesn't seem to do anything
So far I've not really found anything helps, although the day it was at it's worst I decided I really needed a bacon butty (poor husband ended up defrosting some pigs in blankets!) and it did reduce the buzz - not sure if something told me I needed salt or if it was just coincidence. I've only mentioned it to a GP once (so far) I they just recorded it as an unusual puzzling symptom. I know that's why I was asking for help! 🤦
I have had the same experience during a massive flare a few years ago. It’s so hard to put into words. I have Lupus and it settled when the flare did. Hope you feel better soon.
I can totally relate to what you’re describing! I get this strange sensation/pain and I’m sure it’s my nervous system. Electrical surge describes it so well! I feel like I want to stretch every part of my body. Absolutely nothing I do helps, it feels like it runs from my skull right down my spine and out over my limbs. Luckily it only happens once or twice a year but lasts for anything up to 24 hours.
My friend described withdrawal symptoms when she was taken off an opioid drug too quickly and they sounded very much like what happens to me. But why and what causes them I have no idea!!
I have gotten inner trembling from low thyroid. good that you already checked that. Sounds like dysautonomia is a good answer for you, seems in my Sjogrens group that many people have autonomic and neuropathy issues.
I also have weird neuropathy sensations: prickly feeling all over, feels like mosquito bites or stings and electric shock sensations in my feet, also just feel nerve irritation. There are no tests for it but it fits with “small fiber sensory neuropathy”. The worst part is when it gets in my imagination- weird I know, but when it’s bad, I close my eyes to sleep and there are flashing lights that coincide with the neuropathy. It’s maddening and impossible to sleep. I take prednisone which helps and 400mg hydroxychlorquine has helped.
I saw a good neurologist and told him all about it, even that I can see it in my imagination. He said, “Of course you can see it, it’s a brain disorder”. whoa surprised me. He said it’s a type of migraine activity like migraine auras, which is electrical activity in the brain stem / trigeminal nerve. Sort of like the brain stem is overstimulated sending signals all over. It can be triggered for me when I’m over-worked, not enough sleep, busy noisey environments- just anything that is stressful or over-stimulating. He said some people are just sensitive and get overloaded by the environment. He said the answer is to calm down, eliminate caffeine, reduce stress. I’ve found meditation and acupuncture also help. good luck
Thanks poseymint I am coming round to the idea that it is dysautonomia, I also have what I call a broken thermostat which fits with that. Overstimulation sounds a good fit as I do sometimes end up with my mind racing round and round. I'm already cautious with caffeine as I can't tolerate coffee (I actually react to it) but I have slipped out of meditation lately, might need to build that back in... Interesting that the neurologist you saw acknowledged it so readily.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Quinoric 
Swollen hands and feet - mtx side effect?
Diagnosis
Burning/ hotness in legs & thighs and slightly drunk feeling?
Left sided headache for 10 weeks and internal tremor for 6 months
