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Neurological symptoms - Girdle band sensation

…otherwise known as the MS Hug.
Has anyone else experienced this - or know of anyone who has? I can’t find any other cause for it online besides MS and I apparently don’t have that.
My neurologist didn’t say anything when I told her about it. Thanks, Zel
#Neurological symptoms

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New here #lookingforanswers

Hi I am new here. You can call me Bird for short. I have multiple chronic illnesses and am a childhood trauma survivor. It’s all too much to list in an introductory post but they include #heart , #Neurological , #gastrointestinal , #vision disorders and more. I have been through 2 longish term relationships, one was an engagement, but I don’t know how to have/ find a healthy one because men have to get past/ not take advantage of my illnesses ( I am a 40ish f that just appears a little younger but I feel like I’ve missed out on everything I should have done by this time because I’ve been sick at home most of the last 10+ years) how do I find someone who understands? Even friends? When I can’t drive… If anyone can relate and has figured this out please let me know. #lookingforfriends #lookingfornormal

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The "daymare" I am living within.

This is a place where we can share our #Thoughts and our #feelings to one another. I have been #Trying hard to make things right with my life, and I know that it is difficult. I think a lot of us in this world feel a bit #lost right now. It is understandable because of what is happening in #ukraine and #russia at the moment. It is also #difficult to deal with #MentalHealth at the same time when you have a #MentalIllness that does not ever take a break. #Medicine can only take you so far in this world to make things #stabilized in the mind.

When #stressful situations occur, it is more difficult for those who have mental health conditions to handle than that of someone who does not have it. It is because we are already battling a mental war trying to use our #Therapy skills to apply to the #behavioral aspect of things while the medication helps take care of the #Neurological aspect of things. However, on the right kind of #Medication we are able to handle things a lot better. Of course we will always have some kind of #Sadness in our lives, as it is not the #Goal of medication to make us #robotic . However, the medicine we take does help to ease the existing conditions we already have so that we are less #sensitive to the #Extremes we would feel without the medicine.

I have #BipolarDisorder so this is something that is already a #Battle since I was about 16 years old. Sometimes all I can do is put on some lipstick and handle it the best way that I can, even if that means I need to take a few extra #Naps in the day. Whenever you are faced with #extreme amounts of #Stress things are not going to be easy for you. That is #normal . I just #wish that life were a lot #easier to handle though for those of us who have pre-existing mental health conditions that create more conflict and blow up the #emotional responses.

So - If you are #Reading this, please #DistractMe and give me something to think about other than my Dad's liver #Cancer


journal entry no. 11

This is day 4 in a row of being able to make it into work! Hopefully this is the week I can make it in all 5 days. Fridays are usually easy for me to push through, especially when I'm going to visit my partner over the weekend. Mostly cuz I know if I can't make it to work, then travelling on the coach bus isn't going to be a good idea either. So, barring any sudden severe symptoms, if I make it through today, I can make it through tomorrow.

Not that today is easy. I slept less than 4 hrs last night. I woke up achey and stiff. I'm using my cane for the first time in weeks, because my bad hip is being fussy. My fricken face muscles feel weak and heavy so talking, smiling, or even just opening my eyes is tiring. I'm resting my eyes frequently, in between tasks. On top of it all, this inflammation in my neck/right should just REFUSES to subside. This goal of mine shall not be easily achieved.

How is everyone else doing today? Are you also pushing through something, or working towards a goal? Are you letting yourself rest and respecting your limits today? Who else is just HOPING to be able to get in a full work week, like me?
#ChronicPain #Neurological #Work #goals


journal entry no. 7

I was looking back at some posts from a year ago. This time, in 2019, I was shovelling the driveway on my own. AND the neighbor's driveway. I had a hip injury, some back pain and circulation problems but I was active. I had a full life. I could work full time. Even up to a couple months before my diagnosis I had a full, life. Migraines and body aches were common true... I still went for walks regularly. I was still pretty strong.
Since July of 2019 it feels like it's just all been downhill. I've gone from being in a moderate amount of pain while still functioning pretty well, to having to work part time, and still having to call in sick once a week.
I don't know what's wrong with me. This is more than Fibro. But I don't know what it is. None of this makes sense.
I can't help but think that I somehow must have caused this. I must have done something wrong. How else could I have deteriorated so quickly?? I'm trying to follow all my doctor's advice to the letter. I eat even healthier now than I did a year ago. And I feel like I'm getting worse.
My brain scan is in May... What if that's too late? What if there's something seriously wrong and what if it's something that can't be reversed? What if all the brain scan tells us is that nothing can be done?
I wish I knew what I've done wrong. If I knew, maybe I could fix it....
#Undiagnosed #Neurological #Vertigo #Worried


#Syringomyelia Storms

Initially put down to potential tri-geminal neuralgia, and following countless tests & referrals, my symptoms of facial pain, neck & shoulder pain and then loss of mobility in my arm & lower leg, #Syringomyelia was labelled as a cause. Marvellous, I thought. We have a diagnosis. Treatment and a solution is bound to follow. More fool me.

Eight years on, the medical services diminish (poor, struggling NHS) and this condition progressively worsens. I know it doesn't respond to opiods because it is a #Neurological condition (as I'm told by eminent consultants) but try telling that to the billion synapses that rip through my brain with their narrative of agony like an neural electrical storm of hellish proportions.

Tonight's flare up was as epic as it was unpredictable. Breathing techniques. Tick. Mindfulness strategies. Tick. Meds. Tick. Tentative walking to distract the hypersensitive nerve endings. Tick. Oh! I'm beyond it all now.

A syringo flare up feels like a red hot poker being shoved into your spinal cord with elephantine force straight into your neck which then splinters across your shoulders and down your arms in slick, whiplash style. The hands curl up in zombie-like response and that poker cracks across the ankles in a firework lash just to ensure that any pain-free areas are exposed to the raging burning sensations that the rest of the body are consumed by. Speech is impossible.

If there was a passing lorry, I'd nip under it. Not that I could nip. I can barely breathe.

D says, "Shall I call the doctor? An ambulance? This one looks mighty."

"No point," I just about manage to respond. I couldn't bear the long wait of an on-call, over-burdened GP call-back, only to be told, "There is nothing more we can do," like last time.

I couldn't bear waiting in A & E whilst trying not to writhe in agony, then having to recount the complicated medical history, only to be told, "There's nothing we can do," like last time. Even a quick shot of gas and air (why can't we have this on prescription?) or one dose of orimorph couldn't compensate with the hell of driving to a hospital, queuing, explaining to a tired, perplexed junior doctor about the mish-mash, and quite frankly, wierd condition my body presents.

Instead, I'll try and tough it out. I'll suffer the excruciating agony and await the eventual calm. One can hope.


How do I deal with this? #Neurological #Incontinence #Catheter

I have multiple chronic conditions the current combo I’m struggling to deal with is atonic bladder vs functional neurological disorder... managing my self catheterising and when necessary tampon without my neuro symptoms making me make mistakes like.... ending up with two tampons in instead of just self catheterising and other funny but also worrying things like that which when it’s personal care, and risk of infection high how the hell do I get my brain to do things in the right order right place etc etc without the support of anyone?

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Tapering off #Medication withdrawal

I’m tapering off a #Neurological medication I was given for #LymeDisease treatment and feel #anxious which is unusual for me. Any tips for getting through the taper? It’s an antiepileptic. #Drug #withdrawal