Hugs

[lilly60]

Anyone experienced the only way I can describe as " hugs"

Such a strange feeling feels like I am being squeezed stops me in my tracks if I get them they carry on spontaneously through the day

Then none for weeks

Doctor nor specialist know

Had them for about 9 years now

[Hidden]

Yes I am getting hours of hugs every few days just now. At first, about 6 months ago, I thought it was some new kind of panic attack - then maybe gastritis. But it’s unique and neither like abdominal pain nor ribs pain. I have tried to describe these hugs to my doctors but they don’t comment or one tried to tell me it’s costochondritis - but it’s not painful or actually in the rib cage - rather it’s directly below in my upper abdomen.

I guess it’s like the famous MS hug although I have the neurological version of Sjögren’s rather than MS. I feel like a huge hand is gripping me around the waist and has mistaken me for a tube of toothpaste!

It’s put me right off getting real hugs!

[Barnclown in reply to Hidden]

😯 Gosh TT: THANKS 👍..i’d not heard of the MS hug until i read your reply just now & googled it...below is an excerpt from the MS TRUST website info on the MS hug. When i read this info a 💡 went on in my head cause i’ve been describing the shingles neuralgia in my left arm more or less the way the MS TRUST is describing the MS hug...until now i’ve been saying: this neuralgia feels like a big strong person is constantly giving me a Chinese Burn...now i’ll add: or my upper arm is getting a MS hug.

Here’s that MS TRUST excerpt:

“ The MS hug, also known as banding or girdling, is a symptom of multiple sclerosis in which someone feels as if they have chest pain, rib pain or a tight uncomfortable band around their chest. It can be felt anywhere between the neck and the waist and may feel so tight around the chest that it’s painful to breathe. For some people, it can be pressure on just one side of their body.

Some people experience a symptom similar to the MS hug but in their hands or feet, where it feels as though you are constantly wearing gloves or boots. For others, the tight feeling is around the head. The feeling can range from annoying to very painful. The feeling is different for everyone and may be described as pressure, an ache, a tickle, a pain or a burning feeling. It may be sharp or dull and can be short or long lasting.”

🍀❤️🍀❤️ Coco

[Hidden in reply to Barnclown]

Yes although I’m so sorry you relate with your post shingles arm - our nervous systems are such finely tuned things aren’t they?

Oddly just as I’d sent this comment to Lilly60 - my phone rang and it was the GP about my request for expedited ultrasound of rib lumps. He asked me if there was any new symptoms that might add weight to his non urgent referral and make it easier for him to contact radiologist directly so I mentioned the recent intensifying of the hugs.

He said that he completely understood why I’m fretting because 8-10 weeks is such a long wait. But he’s pretty sure that lumps are neuromas or cysts and is more than happy to examine them again.

But he said that hugs are hugs of nerves and muscles expanding and contracting due to my “very complex condition” and aren’t going to be a reason to expedite my lumps to urgent status! He was terribly nice about it though and says he wishes he could but the radiologist is the one who triages from GP’s description so it’s not up to him. 🤷🏼‍♀️🙃🤗🥴

[lilly60 in reply to Hidden]

Thank you all just feel as though I am going mad sometimes explaining to the doctor because I get no answers

Not good to know you all get them but good to know I am not going mad 😡

Wish you all well x

[Barnclown in reply to Hidden]

🙄 there it is! well, MORE credit to YOU for even managing to get a GP to discuss this 👏👏👏👏❤️

[Salzer in reply to Barnclown]

That's so interesting Coco. I had heard of the MS hug but didn't know it could affect other parts of the body

I've tried to explain this weird lower leg thing I get to a few docs and they look at me like I'm a bit crazy too. It feels like my legs are really swollen or like I'm wearing those compression stocking things🧦, but my legs look completely normal. Also just comes and goes as it likes...Maybe this could explain it!

[Barnclown in reply to Salzer]

Gosh..i’ve had something similar for decades in my right leg ...and still have it when my daily pred + myco aren’t helping enough! I’ve been describing it as feeling like my leg is being wound through a laundry wringer...which is sort of like my Chinese burn analogy, and v like a the dreadful hug that i guess is a MS hug. Medics always look at me blankly and say: your spine imaging shows no reason for this sort of right sided prob. But the fact it responds pos to pred + myco + NOW 3-weekly IVIG indicates a neurological cause 🤷🏼‍♀️...and of course i do have v early onset peripheral neuropathy.

Am finding this extra interesting right now cause had to pause myco 5 weeks ago due to complex persistence pattern shingles and my right leg HUG hasn’t flared, so am wondering if this is cause am now on IVIG...so maybe i can now do without myco longterm....but immunology is telling me the IVIG dose for neurological conditions is higher than the IVIG dose i’m getting every 3 weeks

[RxMe]

It was rather unnerving when this happened to me--twice--many years ago, whilst resting in bed, and fully awake. It felt like unseen arms wrapping around me, giving me a gentle but undeniable hug. I chalked it up to an overly affectionate spirit/ghost! In no uncertain terms, I told the dearly departed to head toward the light straight away, and kindly leave me alone. Never been bothered again!

[lilly60 in reply to RxMe]

Wow what an experience x

But unfortunately these are not that sort of hug they are affectionately named " hugs" but the are a form of pain they stop you doubt whatever you are doing even walking