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feel alone and like a prisoner

This is my first time on here. I was diagnosed with MS over 4 years ago. I can always mind being told this may be as bad as it will get. Which at that time I could cope with. Had problems with balance which would go away after few hours and pains in my legs. But took pain killers for that. So I never let it bother me. Not until end of last year. I am now having trouble walking due to balance. Will have it for bout 2wks constantly,where i can not walk unaided cant even go to supermarket. then it goes away for cpl weeks. It is now getting that i have more bad weeks than good weeks. And now constantly for over the past 2 wks I have been like this 24/7. I have bin constantly crying for past week feel I am going in to depression. Have bin struggling at work and panicking over silly things like how am I going to manage out to taxi when finish my shift. Feel like a prisoner as when at work I cant go outside in my lunch break and I cant leave house on my own to go out. I have had to call in sick today. This is first time its came between me and my job. I can not walk today have to crawl on my hands and knees. I live on my own and i am very scared. Also other new symptoms I have had this week is dragging my foot. And very bad toothache which is going up side of my face to my head. I have had this checked by dentist he said there is nothing wrong and that as i have a bridge and crowns lot of wait on my other teeth. I have since read that this is very common in ms. Has any one else experienced this pain. And am I likely to get over this. Or is this it for me. Also waiting to start new treatment tecfidera.

Hi Violet

I’m sorry to hear you are going through a rough time of it at the moment. If you have RRMS then the likelihood is that your symptoms are flaring up and will improve with time. Have you spoken to your nurse/neuro about your recent symptoms? If not, I suggest you do as there may be something they can do to help.

Secondly, have you ever been seen by a neuro specialist physio? I had two relapses last year, it took 6 months to see the physio by which time I had been doing yoga exercises and my legs were not so stiff. I didn’t think there was much point in seeing her but I kept the appointment anyway. She could see I had a problem with balance which was affecting how far I could walk so she gave me some exercises which I practised at home for 10 mins or so daily. Within 2 months I could see a difference and feel much safer out and about. Your problems sound more severe than mine so it might take longer but I’m sure a physio could help. Your nurse could sort out a referral.

As for the head pain, it is likely to be neuropathic and would need specialist painkillers. Google trigeminal neuralgia and see if it fits your symptoms. Again, I think you need to alert your MS team rather than suffering in silence. They can’t help if they don’t know :slight_smile:

I hope you see some improvement soon. Keep coming on here for support too, I find when the chips are down it really helps to know that others understand. You sound like a tough lady, I’m sure you will come through this latest set back.

Tracey xx

Thanks for your reply. I have contacted my ms nurse. I am waiting on her faxing letter to doctor. I have to get 5 day course of steroids. Also explained pain in mouth. It is trigeminal neuralgia. this is first I have heard about this. Worse than toothache the pain. She said steroids should have me bk on my feet over the weekend. I have been referred to physio. Just waiting for first appointment. Just feels like I have rapidly got worse. Just so scared.

Wise words from Tracey there, and would second all that she says.

Hang on in there, Violet. It is hard to feel positive when assailed by unmanaged pain and wretched balance trouble. With luck, things should look brighter when you have got the symptoms - particularly pain - under control. Beyond that, starting on a DMD to get the MS activity under control too will be a real step in the right direction for you. It’s a really tough time for you right now, but you will get through it and reach calmer waters.

Good luck with it all.

Alison

Hi Violet You’ve been really brave and have made the first bold steps into finding help and support by posting on here. You sound like you could really do with talking to somebody, hearing a voice is comforting so you might want to try the MS Helpline 0808 800 8000 you can just speak on neutral ground x You’ve so much going on all at once physically it’s no wonder you are feeling at a low ebb, it’s good that you are acknowledging things aren’t right, but there is a wealth of support on here and people will help guide you in the right direction. If work is also having a negative affect speak to your GP about this and that you are feeling depressed as you mention…and ‘am sure your GP will sign you off work for as long as you need.Also as Tracey has said speak to MS Nurse/Neuro, try not to get over whelmed and panic about what to sort out first explain everything to MS Nurse/GP and ask them to help with the prioritising of all your physical and emotional needs listed by you here. Sometimes being removed from a situation helps with clarity in seeing what steps you need to take, if any , that will make a huge difference to how you are feeling and getting you back to feeling like your old self again. The only thing I would say is from a sickness point of view try to think about returning to work as I made the mistake of being off work far too long and anxiety can set in about returning to work and also fear of leaving the house. I also find writing my feelings down on a piece of paper can help or even talking out loud to myself, when things are changing and are out of our control it’s like a grieving process because we aren’t the same person anymore. As Tracey says if you are RRMS then hopefully the changes you are experiencing at the moment will right themselves. Sending you massive cyber hugs…get tha’ sen on the phone and once you have that support system building you’ll start to feel tonnes better x Michelle xx

Thank you all for your kind words. Have spoke to ms nurse. I am waiting on her sending letter to doctor. She is prescribing 5 day course of steroids. Said hopefully be on my feet by weekend. Hopefully take away pain in my face. She said was trigeminal neuralgia. Nvr heard of this before now. She has given me hope. Hopefully will return to work monday. Been with same company 5 years and this is my first sick day i have had. Also have been referred for physo just waiting on appointment coming through.

Hi Violet can I second everything that has already been said and stress to get the medics involved if you haven’t already. If nothing else it helps to talk to someone especially when you live on your own. I also live alone so know how you frightening it can be. If you are feeling low there is nothing wrong with taking something to help with the low moods I took Citalopram a few years ago when I was going through a bad time, ask your GP for something to lift your spirits. Keep logging on and let us all know how you’re doing. Take care Jan x

Hi, violet, I don’t want you to be disappointed if the steroids don’t help with the TN because it is possible that your other symptoms may improve but you will still have the horrible face pain. There is medication that will help which your GP can help you with - carbamazepine and amytriptolene (sp) to name but two. I am mentioning this not to be negative but to let you know that there are alternatives which are easy to get hold of. Jane

Violet you don’t mention it but walking stick or crutches are a real boon to help with walking. It could be the face thing triggering a relapse or an infection Urine infections do me like a killer. Don

I wrote kipper kindle said killer I hate predictive text GRRRRR

Hi, I have suffered from trigeminal nueralgia and it is a nightmare, the pain is off the scale. I have been prescribed neurontin and it has been a godsend. I still occasionally get pain but very mild and bearable. This is one symptom that can be sorted out with the right medication. Ann

Thanks Don. I dont use walking aids. I am really embarassed to. Dont want anybody looking at me knowing got a disability. But I do realise it might come to that. I cant see me making full recovery from this relapse. X

Violet vanity is a bugger if you fall and break a wrist or black your eye people will look at you then… They are tools no different than a pen or a chair. I had to overcome my own fears and then realised how much better life is with the right tools to equip me on my journey this is about You no one else Don

Here is a flower to cheer up your day

Hi Anne. I did ask for something for the pain. But ms nurse didnt want me on too much medication. She said see how steroids go. If still in pain then they will prescribe me with something else. I feel like a walking pharmacist with all this medication. I am taking 5 steroid tablets a day. Plus have to take 2 stomach tablets to counteract with the steroids. And i am having my first delivery of trecfidera delivered tomorrow and have to take vitamin c and d to counteract with that. Is this neuralgia a constant symptom. I was hoping would be like other symptoms that have came and went. This is first I have had it and worse than toothache x

Thanks again Don. I think it probably is only way forward for me. X

Oh, Violet

I felt exactly the same last year. I had another relapse affecting my legs and the thought of being stuck indoors on my own for weeks on end was the motivation to buy a walking stick.

I came on here for reassurance because I didn’t want a stick at just 48 years old but I knew deep down that I needed one. The sensible folks here made me see sense. I bought a bright red, floral one because I decided if I had to have one it had to reflect my personality. The first few times I used it, I felt really self conscious. I now feel more self conscious without it because I look drunk without it. It’s surprising the difference it makes and I feel so much safer. My physio also pointed out that it’s better that people realise I have a mobility problem and give me understanding and a bit more room than assume I am drunk and give me dirty looks!

Your stick should be the right length so either seek advice from a physio or measure from your wrist bone to the floor while standing straight and tall. My stick is a folding, adjustable one so I can change the height slightly on the rare occasion I wear slight heels! Give it a try and get your freedom back. I bought it from the stick and cane shop online as they have different lengths and lots of choice and were reasonably priced.

You may be right. You may not make a full recovery from this relapse. Tbh, I still haven’t managed to walk as well nor as far as I could before but my stick is helping me to get there safely. I’m still hopeful. At least it’s given me some freedom in the meantime.

Good luck

Tracey xx

Thanks Tracey. You are so right about the reassurance you get from this site. I am waiting to see physio so will speak to them about it. Also going to look in to reflexology. X

I wasn’t thrilled to realise I needed a walking stick at age 42, especially since neither of my parents uses one, but it comes down to using a stick or staggering around and falling flat on my face. Of the two, I’ll take the stick, thanks.

I was pleasantly surprised at how few people have said anything - it has just become part of me. Those who matter to me know why I use it and I don’t care what anyone else thinks. I go out more and go further with the stick than I would without it.

I have ordered crutches online. Think they will give me more support. Just like to thank every one for their reassurance. If it wasn’t for this site I would never have ordered them. Now just need to try overcome the thought going back to work Monday. I was of sick Thursday and Friday as I have had no mobility. I can walk little bit in house now. But not outside. I am constantly shaking and heart is racing. Not sure if this is anxiety or the steroids. Feel longer I stay off worse it will be to go back. Not sure if I should at least wait to I finish steroids. Im not one for staying off this first i’ve been off in 4 years. X

I have ordered crutches online. Think they will give me more support. Just like to thank every one for their reassurance. If it wasn’t for this site I would never have ordered them. Now just need to try overcome the thought going back to work Monday. I was of sick Thursday and Friday as I have had no mobility. I can walk little bit in house now. But not outside. I am constantly shaking and heart is racing. Not sure if this is anxiety or the steroids. Feel longer I stay off worse it will be to go back. Not sure if I should at least wait to I finish steroids. Im not one for staying off this first i’ve been off in 4 years. X