Painful Night

[TiaPhipps]

Hi all I'm sharing this as I wondered if anyone has experienced similar. Or has any advice

my thoughts are that I've overdone it, I was on a 16-hour shift yesterday (from 6am-10pm) and because of emergencies and/or situations that happened in the day I did not sit down, nor did I have a break, eat anything or barely drink (not more then 500ml in the entire day) but this is what care work is like sometimes. And when your the senior and in charge u have to put everyone else first. All my staff had breaks and I checked on them. But I forgot about me, this used to be my everyday but I can't do it like I used to.

Anyway the thing I'm looking for help on, this was at 6am this morning I just woke up and literally started crying in pain, because my right leg was all cramping up / like spasing out, it was extremely straight and super tense, I have not been in that much pain for a while it hurt like hell, once it stopped I got myself out from my bed, and its so tense and painful only just about made it to the toilet cus it's hurts so much to put pressure on, that was very scary,

I managed to hobble back into my bed (where I still am now) but god that hurt so much, it's still painful now but not as intense as that was, jeasus. Never had that before. I've had leg cramps but this was way way worse.

Anyone had similar. Any advice. I'm supposed to be working from 3pm today, I don't even know if I physically can. But joys of senior/ care work, there is so many guilt trips that will come my way if I don't go in.

[Cherie]

Hi TiaI am sorry to hear you are having this. I take 2x 50g of Lyrica at night to help spasms and then another 50g during the night if needed. It has very occasionally had to be more.

In the meantime try and do some stretching to see if it helps.

You should talk to your specialist about it.

I hope you can get it to ease off and get to work.

Cherie.

[TiaPhipps in reply to Cherie]

I don't have a specific contact or specific doctor yet, would it be something I could mention to my GP, or would it just go over their heads

[Cherie in reply to TiaPhipps]

I have a very good GP who helps me, but not all GP's are so good at understanding our condition. Do you have the same one as the rest of your family in which case they will be able to help?

Monkeybus mentioned Baclofen, but I didn't like the side effects although if you only need it at night it shouldn't be such a problem. Some people say Magnesium has helped them. I'm afraid it may take a little while to find out what is best for you.

I often have clonus in my right foot when I get out of bed. My foot doesn't stop shaking when I put weight on it (really annoying if you are trying to get to the bathroom quickly!)

Are your legs okay during the day with doing such long shifts?

Cherie

[TiaPhipps in reply to Cherie]

Unfortunately I live far from my family so I have completely different GP, yeah With my legs it's like when you catch a nerve sitting and ur leg bounces but its painful,

My legs give me a lot of pain more so now then they ever used. And I'm starting to struggle a lot specifically my hips and knees and just overall ouch everywhere if I'm honest, I have no clue how much longer ill be able to do it for

[Cherie in reply to TiaPhipps]

Could your Doctor at Oxford refer you now to a neurologist or will he want to wait until the results are back. We saw the genetics Dr Nemeth nearly 20 years ago when I was diagnosed. I know what you mean about ouch everywhere. Try your gp ASAP to see if you can get some relief.

[TiaPhipps in reply to Cherie]

Ive got a call on the 27th in the morning also going into see the Nurse later that day as well for some bloods so hoping we can do something for now. And I'm glad someone understands I did not have the words to describe it otherwise.

Thank you for your continued support x

[Cherie in reply to TiaPhipps]

You are very welcome Tia. I hope they can help. Let me know how it goes. I meant to say that I am also taking Naproxen at the moment for back pain which helps a bit and sometimes cbd oil.x

[Cherie in reply to TiaPhipps]

Hi TiaHow did it go on the 27th?

[TiaPhipps in reply to Cherie]

Hiya so I mentioned it and I basicaly got dismissed for now , until my bloods are back they don’t want to change anything .

[Cherie in reply to TiaPhipps]

I am sorry that they won't even help with some painkillers. I hope it doesn't take much longer for your results. Maybe try cbd oil? Although it can be expensive you can get a lot of offers these day but buy from a reputable company. I use it occasionally but only find the stronger 20% sometimes works.x

[monkeybus]

Before my spasticity kicked in proper, when I just had mysteriously worn out shoes, crazy clonus, and twitchy legs as I went to sleep, I'd wake up in the middle of the night in complete and utter agony.

Like a vice was turning around my calves. Unbelievable pain. Out of a deep sleep, I'd be all disoriented and by the time I had figured out what was going on, and I'd groggily massaged my calf/ves, I'd be out like a light again.

I'd forgotten by the morning, but it happened enough times for me to realise it was now a regular thing.

But then the fatigue and spasticity ramped up, along with the spasms at bedtime getting out of control, I started boozing, then Baclofen, then Gabapentin.

Haven't had that pain in a long time now. Wouldn't rule out the chances of it returning.

If you don't fancy muscle relaxants, I'd recommend deep heat gel, hot patches, and/or TENS stimulation. Tens is fantastic for muscle pain. Just a lot of trouble hooking those wires up is all. As soon as the electricity starts flowing, the muscles relax.

[TiaPhipps in reply to monkeybus]

This very much describes how it felt, I've suffered with cramps in the night and I take magnesium for this but this was a next level of pain. My report for the physical I had in oxford mentioned I had clonus in my ankles / shins, but I don't really understand what this is and I tried to reasurch it but still don't get it. I'm willing to try anything just wondering how I get onto something for it, and I've tried a tens machine before but it did not help me much

Thank you for the reply as always x

[Equinney in reply to TiaPhipps]

Oddly enough, drink some pickle juice if you can stomach it next time. It seems to ease cramping 🤷🏼‍♂️ If the spasticity does continue even with TENS treatment, ask your GP about Baclofen. It’s an anti-spasmodic. Hope and pray it’s getting better though.

[TiaPhipps in reply to Equinney]

Thank you ,I was wondering what baclofen was. I'm waiting on the GP for now and I might try a TENS again as well. Wouldn't hurt to try.

Thanks again x

[monkeybus in reply to Equinney]

The pickle juice for cramps thing is interesting. I was skeptical at first, but it is backed up by limited scientific evidence:

pubmed.ncbi.nlm.nih.gov/199....

Then again, this report says no:

ncbi.nlm.nih.gov/pmc/articl...

Of course, I still maintain that I have spasms, not cramps. Is a cramp a spasm? I don't know.

[Equinney in reply to monkeybus]

Cramps and spasms are different. From what I have been told; a cramp is usually due to overuse of a muscle, especially if combined with heat and lack of fluids. A spasm is generated as a result of damage to the nerves either in that area or leading to that area.

[monkeybus in reply to Equinney]

Thanks you very much, Mr Equinney. very wise man, you are.

That'll be spasms for me then. Then again, I did read that people with spasticity have to use 30% more muscle power as a rule. So, I can see how it's easy for us to overuse our muscles into the bargain. That could bring about cramps.

[monkeybus]

I tried magnesium, likely a lot of people have. Thing is, there is no scientific evidence that it actually works for cramps.

pubmed.ncbi.nlm.nih.gov/329....

ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/109...

A great laxative though.

I have posted a lot about TENS in the past. A lot of frequencies, pulse widths and electrode placements to play with. Depends on how much you spent on your machine. I bought the most expensive one.

I used to call them cramps, but really what they are is spasms.

A tranquiliser before bed will fix them as well. And 4-AP, though it doesn't last very long.

[TiaPhipps in reply to monkeybus]

Yeah Im going to do some more research on TENS machines as well and try it again. Maybe it would be of help to me now. Where I feel it is spasums of my muscles and things rather then normal cramps. Luckily it's only happened that once so far to that extent but I would like to be prepared.Thank you for the support. X

[easygoin1]

Hello Tia,I am fortunate that I don't have true "pain" but I have ice water or cold wind on my calves and ankles and feet in bed, and used to have constant spasms, but I've been taking Gabapentin for a while and it helps reduce it, although I am approaching the max dose. I first was put on Lyrica but found the side effects too much and they moved me to Gabapentin. I think you should discuss it with your GP and hopefully they can give some benefit and if need be they can send you to a Neurologist. Tried Baclofen for a time but didn't find much help and found it made me too drowsy and that was a problem for driving and functioning. We're all different and what works for one won't necessarily work for another. I pray you get some relief and can rest and recover!!!

Be well and have as good a day as you can!

[TiaPhipps]

Thank you so much, Yeah I will probably post an update with what me and the GP decide. As I feel many people are invested in my story. And I feel a sense of relief talking to others. I saw a neurologist before and had a brain MRI which was mostly normal (could see some parts different then they should be but this is in line with my mental health condition BPD also know as EUPD) so I will just have to wait and see where I go from here. thank you again I love all the support and information people are helping me with x

[Hillary]

Hi Tia, I’m with Cherie re Baclofen don’t like the side effects. Lyrica is what I take, 425mg spread over the day, you would need to talk to your neurologist to work out what would help. Unfortunately I still get clonus and nothing stops that.

[StevenSims]

Hi,

Drugs don’t work! Give vitamin d3 a try?

All the best

[Hillary in reply to StevenSims]

I’ve been on it for three years now Steve. Consultant told me it helped me fighting Covid when in hospital. I now get it on prescription, which is free in Wales

[StevenSims in reply to Hillary]

Do you see dr Lowman?

All the best

[Hillary in reply to StevenSims]

I don’t always Steve. I had an appointment last June and was expecting to see Andrea but ended up seeing a Dr Zobin, Speciality Doctor in Neurorehabilitation. She was only interested in the constipation part of my disability. She calls herself the Bowel Queen. The fact that I'm suffering with lots of clonus type symptoms in my arms and hands, she gave me a biro and a piece of paper and said draw a circle. Your fine she said, she was going to get me better once she had sorted my bowels. Andrea has never told me I will get “better”, I disliked the woman I saw and won’t be seeing her again.

[StevenSims]

Dr Lowman is good as gold with me does what she says! She arranges my mri scans every 6 months and has put me in contact with a bmt specialist! I’m prepared in case my lesion gets active!

[Cherie]

Hi Tia How are you?