Wobbling insides?: Does anyone ever feel like their... - LUPUS UK

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Wobbling insides?

HeKe profile image
HeKe
11 Replies

Does anyone ever feel like their insides are wobbling like jelly? My head is ok, but I'm wobbling internally from the neck down.

H

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HeKe profile image
HeKe
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11 Replies

Yes constantly. Internal tremors fir me I think.

HeKe profile image
HeKe

Thanks TT. I feel I overreact to every twinge in my body.

popsmith1874 profile image
popsmith1874

I get them constant when I'm stretching after body conditioning, I'll have them up in the air and then the shaking starts

Georgie-girl profile image
Georgie-girl

Yep I have had them for ages and no doctor has been able to tell me what they are. It's like I've swallowed a mobile phone on vibrate.

Melba1 profile image
Melba1

Me too! That’s a great description Georgie-girl! I have tried to describe it to neurologists and rheumatologists but the best I could do was that it felt like my blood vessels had a fizzy drink instead of blood running through them. Neurologists laughed and dismissed patronisingly and rheumatologists have put it down to the effects of lupus on the nervous system. Mine gets much worse after some drugs when everything vibrates and fizzes - especially MMF and rituximab if you’ve just had/ on one of those?

I thought at first it was nerve toxicity from the disease/ drugs as the rest of the description seemed to apply too - especially the brain issues 😬 but I’ve decided it’s probably just one of those weird lupus/ CTD things that we’re unlikely to get answers for.

X

HeKe profile image
HeKe

I'm not on any drugs yet as I'm going through the process of trying to get a diagnosis so it can't be a side effect. There, I've resolved a medical dilemma 😂😂😂

Melba1 profile image
Melba1

😂 I do think if we put all our heads and symptoms together we could solve most of it!

What are your other symptoms? Have they given you any idea of a diagnosis?

X

HeKe profile image
HeKe in reply to Melba1

I generally have mildly aching joints, burning muscles, dry patch in my throat, burning feet, full body twitches when going to sleep/asleep, night sweats, Raynaud's (even on hot days I've noticed), oral lichen planus, shooting tingles into my hands and feet, pins and needles and currently internal wobbles. I've probably forgotten a few! In fact, I've forgotten the biggest issues for me most of the time - fatigue and loss of energy. I've been in bed most of the time over the weekend, either because I overdid it somewhat on Friday or because of the sun. I'd like to get back to the person I was this time last year, flying around the world doing a high powered job, jumping off a plane then competing on my horse or entertaining family and friends. I assumed I'd have that energy forever #oops #startingtofeelsorryformyself

Melba1 profile image
Melba1

🙁 yes fatigue is the worst isn’t it? I told my GP I’d rather lose an arm and leg in exchange for normal energy levels and she was shocked - people without this crushing fatigue just can’t comprehend how much it changes our lives.

Once you get a diagnosis and medication it can make a massive difference and you may be able to be a high flyer, competitive horse rider again soon 🤞

For many of us these pains, neuro symptoms, fatigue etc come and go in severity so this may be the worst it gets (especially if you get the right help). A good phase can be just round the corner although it can feel endless when you’re stuck in a flare especially your first one as you don’t know what to expect and don’t have the medical support yet possibly? I’ve had lupus about 8 years and pretty used to it but had an awful flare for nearly this whole past year but I’m finally coming out the other side. I’ve gone from being in hospital and unable to walk more than 50 metres without losing consciousness and unable to remember basic things to a fully functioning brain and able to socialise, work normally and walk 5km, even ran a little yesterday 🙂.

Have you seen a rheumatologist? A good one can make all the difference.

X

HeKe profile image
HeKe

Oh blimey! I'm nowhere near as bad as you were, but I do think I've been stuck in a mild flare since January.

I've seen a rheumatologist privately. He pinned his hopes on me having a post viral rheumatic reaction after a severe throat infection or the start of fibromyalgia and gave me an intramuscular steroid injection which he said would gradually start to make me feel better. Although my fingers are better, nothing else is.

I was always sceptical about his diagnosis. He has ignored the fact that my joint problems started before the infection. Although I've had oral lichen planus and problems with rosacea, skin swellings and lip/tongue swellings for years, the first time I noticed problems was teaching my granddaughter to swim in Gran Canaria. My hips were sore after every swim. When we returned home I gave up weight training as I said it was affecting my hands, wrists and hips. With hindsight I think the sun in Gran Canaria set off a little flare. I perked up over Xmas and had a lovely time coping, as ever, with six adults, two grandchildren and three dogs. Then I started with a sore throat on 29th December and I've never been myself since then including a throat abscess, acute pain in my hands and forearms, strange rashes and the ongoing series of symptoms listed above.

I'm having some blood tests on Thursday as a follow up to the steroid injection but I'm not going back to the private rheumatologist. I have an appointment at the CDT clinic in Derby on 2nd July.

It is so good to have this forum where you can list all of the aches, pains and strange happenings without being judged a hypochondriac!

Jessie_2014 profile image
Jessie_2014

Yes! I get the internal shaking too. It's a bit like when you have a bad fever except you're shaking internally not externally. Whenever I have tried to explain this to anyone they look at me like I am completely mad! You are not alone!

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