Clinical loss of left sided sensation and feeling scared

[WorryRaptor]

Also, sorry for whining a bit here. I realise much of what's happening to me isn't HA, and not anxiety in general. The symptoms are real, and the whole thing is having a massive impact on my mental health. I really appreciate everyone taking the time to reply here. It genuinely means a lot.

I'm going to make an appointment with a therapist this week as I've felt uncomfortably close to unhealthy thought patterns about taking myself out of the equation. Having been there in the past, I'm seeing the early signs of that thought process creeping back in. I simply feel like a huge burden on my loved ones, especially my fiancé. I really try not to offload too much on him, and any time I do, I feel like he takes more and more onto his shoulders.

[Scass]

I’m sorry you’re going through this, and I know how health problems affect your mental health.
I’m glad you are talking to your therapist about it too. I second Nora’s suggestion of asking about fibromyalgia.

[NoraB]

Ignore the above, it is the right thread. I've just had a brain blip (blame the fibro lol)

A previous GP (who I refused to see again) mentioned fibromyalgia to me, immediately following up with that he didn't think it was a real illness in and of itself.

This REALLY makes me angry!!!

This GP needs to brush up on their medical education and I'm glad you refused to see them again!

Fibromyalgia is real. If it wasn't real, why does it have it's own NHS webpage? It is a condition of exclusion (such as MS) but also there's a physical examination where numerous parts of the body are pressed and in somebody with this condition these areas will be very tender. As well as the tenderness, 20 mins after the examination I was in that much pain I needed to take painkillers. The problem with fibro is that they are not sure what causes it. I was diagnosed by a rheumatologist consultant and he explained it to me as a neurological problem that affects my nervous/processing system, but recently the idea is moving towards it being an auto immune problem. A study in 2021 took antibodies from people with fibro and put them into mice. Within a short time the mice became sensitive to pressure, cold, and became weakened. This suggests an auto immune issue and if it is found to be autoimmune it will be a big breakthrough in terms of treatment. As it is, I am stuck in a situation where I can only medicate with opiates because I also have MCS (multiple chemical sensitivity) and no real plan except to be expected to get on with it as best I can..

He said it was likely the same as functional neuralgia and depression just expressed as widespread pain in hypersensitive people. As somebody with friends who struggle enormously with the symptoms of fibro, I made sure I never got booked in with him again.

Anyone who has this condition knows how painful and life affecting it is and anyone who suggests that it isn't real doesn't know what they're talking about..

I'm unsure if I might have it. Certainly the pain patterns seem to match.

There's a lot more to fibro than pain. There's fatigue like you've never know it. There can be sensitivities and intolerances. Vitamin and mineral deficiencies. There are cognitive issues. Sleep issues (waking up constantly etc) and also musculoskeletal issues. You need a referral to rheumatology for a diagnosis. My GP verbally diagnosed me with fibro before he referred me on to rheumatology and I was formally diagnosed in 2019 after struggling with a mountain of symptoms (and these ramping up my HA) since 2011. The trigger was my mum's sudden death; that's where it all started and trauma is one of the reasons for developing this condition..

[WorryRaptor]

Thank you Scass and Nora for your replies. I'll definitely ask my new GP about fibromyalgia.

Fibromyalgia is real. If it wasn't real, why does it have it's own NHS webpage? It is a condition of exclusion (such as MS) but also there's a physical examination where numerous parts of the body are pressed and in somebody with this condition these areas will be very tender. As well as the tenderness, 20 mins after the examination I was in that much pain I needed to take painkillers. The problem with fibro is that they are not sure what causes it. I was diagnosed by a rheumatologist consultant and he explained it to me as a neurological problem that affects my nervous/processing system, but recently the idea is moving towards it being an auto immune problem. A study in 2021 took antibodies from people with fibro and put them into mice. Within a short time the mice became sensitive to pressure, cold, and became weakened. This suggests an auto immune issue and if it is found to be autoimmune it will be a big breakthrough in terms of treatment.

That is so interesting! There are a lot of autoimmune problems in my family, so I wouldn't be too surprised if I had them too. I wonder if they'll discover in the future, that fibromyalgia does indeed come from an autoimmune flare that messes with your CNS.

Much like migraine has been theorised to be autoimmune in nature (though there are SO many different opinions on that) I feel like a lot of chronic illnesses have their roots in autoimmune issues. One of my friends went on a low histamine diet, and she noticed a reduction in some of her fibro symptoms, particularly her muscle cramps and brain fog. She didn't stick to it for very long, but perhaps it was a small window into the potential that it was autoimmune related.

For me, when I ate an extremely strict diet and kept a good sleep routine (as much as ADHD will allow) and avoided a slew of scented lotions and hair products, I had a massive reduction in my migraines. My migraines start with a burst of manic energy, visual auras like a tiny glitter ball in the corner of my vision, then shaking and weakness within minutes, sudden massive energy crash, then nausea, sweating, dizziness, and then the awful head pain that makes me violently throw up. One of my neurologists said she firmly believed migraines are nothing to do with headaches, and everything to do with an immune related process, the headache being one symptom of many.

Sadly, a number of GPs here seem awfully behind on chronic illnesses. I feel sometimes their hubris gets in the way if you even dare suggest your symptoms are anything other than stress or hormones. My new GP is younger, and seems to be a lot more open to discussion, so fingers crossed.

As it is, I am stuck in a situation where I can only medicate with opiates because I also have MCS (multiple chemical sensitivity) and no real plan except to be expected to get on with it as best I can..

I'm so sorry there aren't better treatments and that you have to deal with that. Were you offered anything else to help?

There's a lot more to fibro than pain. There's fatigue like you've never know it. There can be sensitivities and intolerances. Vitamin and mineral deficiencies. There are cognitive issues

That sounds a lot like me. The fatigue literally feels like I'm about to pass away.

[pulisa]

Pain clinic consultants do tend to concentrate on pain management and the trend now is not to prescribe opioids due to the long term side effects. My consultant told me that 80% of chronic pain conditions are caused by chronic muscle tension and anxiety will certainly make existing issues a lot worse. I had some psychological therapy specifically aimed at pain management. I had the option of gabapentin but turned it down as I'm a carer and need to keep my brain sharp.

I didn't get any pain relief from physio but my pain affects my nerve endings and happened as a direct result of a pleurisy infection. The one bad thing about pain clinics is the horrendous wait for treatment to start after the initial assessment.

[WorryRaptor]

Pain clinic consultants do tend to concentrate on pain management and the trend now is not to prescribe opioids due to the long term side effects. My consultant told me that 80% of chronic pain conditions are caused by chronic muscle tension and anxiety will certainly make existing issues a lot worse. I had some psychological therapy specifically aimed at pain management. I had the option of gabapentin but turned it down as I'm a carer and need to keep my brain sharp.

I didn't get any pain relief from physio but my pain affects my nerve endings and happened as a direct result of a pleurisy infection. The one bad thing about pain clinics is the horrendous wait for treatment to start after the initial assessment.

Thanks for the info pulisa! There's much to think about. My pain is nerve related too, mostly from my spine and cranial nerves so I'm not holding out too much hope about getting a lot of relief. I have trigeminal neuralgia (thankfully infrequently) and severe cervicogenic headaches along with cluster migraines. I take opiates for the severe migraines as gabapentin and sumatriptan somehow both caused tachycardia for me and never prevented/helped an attack. I'm extremely reluctant to take any pain relief regularly though, so most of the time I go without. I only reserve them for the worst headaches. I would imagine some sort of psychological therapy might be the best way forward for me.

Are you able to manage your pain so that it's at a tolerable level? I hope you've managed to find some relief, as nerve pain is awful.

The physiotherapist said the one good thing that might come of it is that there will be more than one person looking at my symptoms and the cause of them, and that might help me get sent in the right direction.

[NoraB]

I'm so sorry there aren't better treatments and that you have to deal with that. Were you offered anything else to help?

I've been put on several different meds but I've been taken off most of them due to severe reactions. Presently, I can only take paracetamol and codeine (higher prescription dose and the lower OTC dose which I try first) and Ibuprofen although that affects my IBS. Doing the physio was awful at first; my body felt like it had been hit by a train. About a month in I started to feel some benefit and felt brighter in myself. These days I try and do some Pilates as it is more gentle. I did go for a walk yesterday and it went from cloudy and mild (perfect for me) to warm and sunny so I ended up on painkillers and a heated blanket on my legs..

That sounds a lot like me. The fatigue literally feels like I'm about to pass away.

The way I describe it to my husband is that I start the day on limited energy (I don't wake up refreshed) and by dinnertime it's like someone has pulled the plug on me. Depending on how I use me spoons, this can be earlier. I slur my words and can't form sentences. I forget things. It feels like I have dementia!

[WorryRaptor]

I've been put on several different meds but I've been taken off most of them due to severe reactions. Presently, I can only take paracetamol and codeine (higher prescription dose and the lower OTC dose which I try first) and Ibuprofen although that affects my IBS. Doing the physio was awful at first; my body felt like it had been hit by a train. About a month in I started to feel some benefit and felt brighter in myself. These days I try and do some Pilates as it is more gentle. I did go for a walk yesterday and it went from cloudy and mild (perfect for me) to warm and sunny so I ended up on painkillers and a heated blanket on my legs..

That sounds like a lot to deal with. Fair play to you having such a positive attitude on here when you're going through so much yourself. All of your posts are always so helpful and encouraging


Oh you can't beat those nice clement days where the temperature is just right. I get a horrendous migraine and weak and shaky if it gets too sunny (the current UK heatwave is kicking the shit out of me).

The way I describe it to my husband is that I start the day on limited energy (I don't wake up refreshed) and by dinnertime it's like someone has pulled the plug on me. Depending on how I use me spoons, this can be earlier. I slur my words and can't form sentences. I forget things. It feels like I have dementia!

Are you able to predict how many spoons you'll have for the day or so you sometimes overestimate the number of spoons?

I sort of start off with boundless energy then I crash hard and fast, regardless of me using said energy or not. It doesn't seem to discriminate. This awful fatigue hits within seconds, and I go from energetic and engaged to feeling like I'm about to pass out with barely any strength to keep myself sitting up. It's like my system is shutting down and my brain feels like it's made of treacle. If I hadn't had brain imaging, I would have described it like some kind of exhaustion seizure.

[WorryRaptor]

Yikes. Just a half hour ago, my tongue went numb on the left side, and it actually felt like my throat momentarily slid closed. Now it feels kind of tight/weak. That was extremely disturbing. My tongue is kind of twitchy lately too. It sounds really like ALS or some other CNS disease, but it would be extraordinarily unlikely that all my limbs and areas of my left side would be affected all at once. ALS doesn't really work in that pattern. Whatever is happening, something in one hemisphere of my brain/or brainstem is constantly getting inflamed/compressed/irritated enough to cause hemi-paraesthesia. There's no other medical cause for so many areas on one side of my body to be involved.

To add the cherry on top, every time I bend forward or tip my neck a little, or pull an expression, my head fills up with horrible pressure. No pain, just this intense balloon inflating feeling that goes right to the front of my face and back of neck.

[NoraB]

That sounds like a lot to deal with. Fair play to you having such a positive attitude on here when you're going through so much yourself. All of your posts are always so helpful and encouraging

I have to work hard on my attitude, believe me lol

Oh you can't beat those nice clement days where the temperature is just right. I get a horrendous migraine and weak and shaky if it gets too sunny (the current UK heatwave is kicking the shit out of me).

Yeah, I've had two migraines this week..

Are you able to predict how many spoons you'll have for the day or so you sometimes overestimate the number of spoons?

I was in bed most of yesterday so I have more spoons to play with this morning. However, it's going to be hot and I have to go out and get my boy a birthday cake so I will lose a few in the heat and I'm normally knackered by dinnertime..

I sort of start off with boundless energy then I crash hard and fast, regardless of me using said energy or not. It doesn't seem to discriminate. This awful fatigue hits within seconds, and I go from energetic and engaged to feeling like I'm about to pass out with barely any strength to keep myself sitting up. It's like my system is shutting down and my brain feels like it's made of treacle. If I hadn't had brain imaging, I would have described it like some kind of exhaustion seizure.

Aside the boundless energy, this sounds a lot like me...