Friends - I need your advice and sensible talking!!

Primary progressive MS
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Dear All,

Hope you are doing ok?

A bit about me. I was diagnosed with RRMS about 8 or 9 years ago. ABout five years ago the docs said they got their initial diagnosis wrong. I accept that, no problem. I don’t have relapses and I don’t respond to steriods. That and with more mri’s I was re diagnosed as ppms. Fine. Just another label.

I have probably had the disease for years. You know how hard it can be to diagnose sometimes.

Just over the last couple of weeks this has been getting difficult. Really difficult. Walking is slow and so painful. My feet hurt with every step. The MS has caused my feet to become very high arched. I have special insoles but they don’t make it any better.Stiffness in legs adds to the problems. I can see my wheelchair coming into play soon.

I hurt in every joint it seems at the moment. I can’t lift things, my wrists are very weak. My ankles have become weak and wobbly. Can’t raise my arms above my head. I have neuralgia in my ribs. I feel like there is a plank of wood on the right side of my neck, stopping me from getting comfy at night. The plank sticks into my neck when I try and get comfy. Now the spasms have started in my feet, always at night. My feet are irritable also at night. I also have spasms under my neck, right side of my throat. That one is really nasty… It doesn’t last long quite scary though and very painful.

Cognitive problems add to the picture.

I can’t talk to anyone about how bad this is getting. Don’t ask me to explain, it would take me far too long. I just can’t talk to anyone close. Too much depends on me (i know I am dispensible don’t worry). Hubby works hard to look after me. FAmily don’t accept my problems and when I do try and talk it goes quiet. Nothing comes back so I have given up.

I have a slipped disc in my lower back, white a bad one I am told. In my neck spine area I have arthritis, maybe that is what is happening in my other joints?

Anyway friends. Thank you for letting me open up. I am not going Anon.

I would love to hear your advice.

Night

Anne

x

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I just wanted to say hello Anne and welcome to the forum. I’m sorry that things have been so hard for you, you’ll get lots of support on here, everyone is so friendly.

Michelle x

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Michelle You are so kind. I have been coming on here for quite a few years. Not a newbie! Just wanted to give a bit of background before I posted. Night night Anne X

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Hi Anne,

You seem to be very isolated and lonely and your story sounds like just the start of a conversation. I get the feeling that your emotional pain is just as intense as the physical problems you describe.

What is it that depends on you so much?

Yours,

Anthony

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Hi Anne, sorry to hear you’re going through such a tough time. You are obviously being very strong in a very difficult situation.

So, firstly, are you seeing a neuro regularly? I just wonder if you are getting the drugs that could help with the pain (Gabapentin, Pregabalin or Amitriptyline?).

Have you had physiotherapy to help with some of the physical problems? It can help a lot. Either your neuro or GP can refer you.

You say you see a wheelchair coming into play soon. I know how negative it can feel getting your first wheelchair, but believe me when you do get one you will realise that life can be MUCH easier with one. It is a mobility aid. Nothing more, nothing less. It’s there to help you get about in comfort, and by the sounds of it, mobility is so difficult for you maybe you should consider getting one now? Your GP can refer you to local council who can provide one at no cost. Also handy as they service it once a year and replace it if need be.

I personally use a wheelchair for trips out of local area but what is a huge bonus to me is a mobility scooter. This is something that really has given me back my independence. Once you get the hang of it it’s great!!! You can go shopping on your own again, get to GP surgery etc. It gives you your freedom back, so it’s well worth getting one.

In terms of your family, I’ve given this some thought. I think you should make a big effort to talk about your MS to them. When they go quiet say ‘Look it’s not going to go away if you ignore it’…and then carry on talking about it. You might have to do this time and time again and just get silence for your efforts, but stick to it. Do it EVERY TIME you are with the family or any member of the family.

I think the more you talk about it the more it will become normal for them…also they’ll get the hint that you are NOT going to shut up about it. Eventually they are going to have to respond!!! Make it your personal mission. YOU WILL NOT SHUT ME UP!!!

Have you looked to see if there’s an MS group in your area? It would help if you could talk to other people with MS. If you click on SUPPORT at top of this page you will find (somewhere on there!) where an MS Society group is in your area.

Hope this helps Anne…it’s time to make a big effort to change things for the better. To get help to cope with your symptoms better & to get your family to break their silence! You can do this!!! It will take time but you can do it!!!

Lots of love,

Pat xx

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Hi Anne

Sorry to hear things are difficult for you, I hope things improve quickly.

Please don’t think of a wheelchair as a negative, it is a positive as you are taking control, and believe me it is just a tool that makes your life easier. Why miss out on doing things, when there is something that will help?

Your GP or MS nurse can refer you to wheelchair services, who will provide a chair that is correct fitting for you, and service it annually, so take advantage of this, and you will have freedom and independence.

I think with your family the only thing you can do is to keep talking to them about how it effects you, and surely, in time, they have got to relent and do likewise.

Wishing you all the best, take care.

Pam x

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Hi Anne. Pat has given you some excellent suggestions, I agree with her, you NEED to see your gp, Neuro or ms nurse. There are drugs to help with pain, it took a long time to get mine under control as I struggled really badly with nerve pain, mostly but not exclusively in my lower body. You really shouldn’t have to live with that. There are also drugs for spasms. Please go and see someone, the one in the team you feel listens and will help you.

Something else to think about is getting your OT to come and see you. They can assess you for any equipment etc you may need, but they can also get you referred to a social worker who will ensure you get all the help you need. Have you considered counselling? They might help you but may also have a talk to your family as I don’t think they are being supportive from what you’ve said. Your ms nurse may have someone you can contact, mine referred me to a cancer centre in my area as they also help people who are chronically ill. Do you have something like that in your area?

I don’t know what else to suggest, you’re obviously struggling, but please seek help from someone, you’ve obviously deteriorated since your last assessment and could even be eligible for more financial assistance that might make it easier for you to get someone in to help you at home a bit. Take care and make sure you rest, your symptoms won’t ease if you’re exhausted.

Cath x

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Eeee Anne!

You and I used to chat via pm, when you were on here more.

I`m so sad to read how bad things are for you. It doesnt help when you cant speak to anyone around you, for emotional support.

With all what`s going on, I reckon you need to see someone about maybe, a look at your meds.

We`re here to listen and support you as much as possible.

There have many many lonely stories here, where the authors have felt better, just knowing we understand you.

much love Pollyxx

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Just to let you know we are all here for you.It sounds awful what you are going through but i agree with everyone else.You need to see different professionals to get some help, in the meantime talk to us we all have some if not all the symptoms you describe.Ms is a horrible illness keep your chin up you shouldnt be in such pain so please get help.jo x

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Dear Friends,

You are lovely lovely people. Thank you so much for replying. I will try and answer some of your questions.

I take Pregabalin for the pain. I can’t tolerate the other drugs I have tried.

I only see the Neuro once a year. He has said that he can’t go anything for me so it is a case of just seeeing him to have a catch up really. I changed Neuro and this was the first time I had seebn him. He was recommended as very understanding but I didn’t really see that. I had spent ages writing up my history so that I could refer to my notes. Thought that would help him too,. Did not ask one question about my history. Other to say that he wasn’t sure that my former Neuro was right in saying I had PPMS. I then had to explain, no relapses, MRI (numerous) several infusions of steriods with no effect. All this made them think it was PPMS not SPMS. He shut up cos one dr won’t go against another eh? Nevertheless he was extremely unhelpful, did not examine me. The appt I had waited nearly a year for was over in 10 mins. I did not expect miracles but a working relationship I would have settled with! We do not have MS Nurses here.

My family. I get what you are saying. I have to keep banging down the barriers. Believe me. I have tried for years but to no avail. My family just does not talk about the “bad things in life”. Let’s keep it airy fairy and in never never land. That way we do not have to change our behaviour. I am the youngest child and that is where I stay. No matter what I try and do. The only person I would have had a chance to talk to about this was my Dad. Unfortunately he is dead. My diagnosis came after his death so I was never able to “chew the cud” with him about it. Honestly there is no changing my family. When you talk to them they are just waiting for you to finish so they can talk about themselves. I don’t mean that to sound harsh but that is how they are. If I mention anything about the MS, silence. Then they continue talking about themselves and their problems.

I was having physio although I have to get a new course of treatments sorted out as they have finished.

I was just chatting with my Mum on the phone. I phone every day to see how she is. We were having a nice conversation until she started saying that we three kids want her money and don’t want her around anymore. I tried explaining that we are trying to put things in place to help her. To help her stay in her own home, because that is what she wants. She is at the point where she is a danger living on her own. I have just spent three weeks with her (we live far apart) trying to sort this all out with the help of my siblings. They all live closer and visit her on a weekly basis. Because of this they do not stay over with her. I was there for 3 weeks. I did everything for her. Meals. Shopping. Housework. This is part of the reason I am having a meltdown now, did too much. Anyway. I tried, very politely, to explain, again, what we did and why. To help her. Again, we are after her money. So I spoke to her in a way I have never done before. Still politely and with a low voice. But. How dare she think that of us. We do everything to help her. I won’t have that help when I am her age. Anyway she got so angry and was shouting at me. She put the phone down on me and I am sitting here in tears, typing this out! I am so upset.

Why does she have to be so mean to me? She isn’t like this with others, or not so bad. They are the blue eyes. She said on my wedding day that I have caused her more problems than all three of us put together. Said that in front of all the guests. That gives you an idea of what she can be like.

There isn’t an MS support group in this area. I have looked but nothing. That is why it is so good to come on here and talk.

I have a little transfer wheelchair that I have used once or twice so I don’t think I am looking on it as negative. I thought it would be a huge leap for the old mind, but in fact it wasn’t. I am looking a a Travel Scoot or something similar as I really can’t go on like this.

Anthony, you are perceptive. I am lonely. Very lonely. And I am a social person. My job used to involve seeing up to 400 or 500 people a day. Now I don’t see anyone. Hubby says to go out and about. He doesn’t understand that I am struggling just to cope at the moment. He would like to be more sociable. I try and encourage him to go out without me but he won’t. So he suffers as well.

I am depressed I know that. Have suffered for years and I take medication. That is a big battle to overcome that. But I think everyone who knows me would not suspect that I am depressed. I used toi be in amateur dramatics and I think I am still a good actress at covering it all up!.

My family rely on me Anthony. It is too difficult to explain any other way. My hubby is not in denial. It is just that he think you have to power on. To keep going. He just doesn’t get it. He too doesn’t like talking about it. He sometimes says that I focus on MS too much!!

Yes at the moment I am very unhappy,lonely, isolated and in pain. I am not looking at the future because I don’t think it looks very pretty at the moment.

I am sorry to go on. I know there are people who are worse than me. I don’t feel sorry for myself. I just feel like putting my head under the covers until it all feels better!! I am sure some of you know that feeling?

Eeeeh Polly - I have always been here but just don’t type too much. I wil try and keep in touch more often eh?

Good Night to you all. I hope it is a beter one for one and all tomorrow. Another day, another dollar eh?

You are the best.

Anne

x

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Oh Anne, dear Anne. I do feel for you…not sorry for you, as I know that`s not what you want to hear.

I can also feel lonely, even though my hubby is with me almost 24/7.

He cant talk emotions…he`ll build me a ramp, cook me a wonderful meal, but will he ask how I am? No fear!

But unlike your situation, I do have sisters and carers to off load to, when I need it.

Now, do you think you are able to go out by yourself…that is if you get yourself some outdoor wheels ie a scooter or electric wheelchair? Would you have the confidence?

Have you had an assessment from wheelchair services? There is usually a long waiting list, but maybe you should put your name down, eh?

What else can I suggest?

luv Pollxx

ps…pm me if you like chuck.

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Oh Anne, I really wish you lived nearby and I could give you a hug. My family never understood illness or depression either, they saw mine as a weakness and told me off quite often for needing anti depressants and pain killers. It was only when we almost lost dad and mum cracked and was started on ad’s, and dad did too with his illness that they started to understand what I was battling with.

I don’t think that anyone who hasn’t experience of being ill or disabled really understands just how much it affects you both physically and mentally. I was a nurse with many qualifications including midwifery and psychiatry but I never truly realised just how much a chronic illness affected a person until it hit me. Imagine then how someone with no experience of it should manage. I don’t believe your family don’t care about you, they probably just don’t know what to say or do in case they hurt your feelings. My daughter and I have had major fireworks when I feel she’s either over protective or taking the p…

Have you contacted the Nursing Council about your lack of an MS nurse, as according to the NHS guidelines, everyone should have access to one? There should be someone allocated to your area. The address is: MS Specialist Nurse Association, PO Box 63, Little Marcle, Ledbury, Herefordshire, HR 8 9AA. Tel: 01531 670 481, e mail: admin@ukmssna.org.uk / www.ukmssna.org.uk.

You say you’re on Pregablin for pain, there are drugs that can be taken in addition to them to get control of your pain. I can’t remember how many combinations of different drugs I took before we found a combination that keeps me relatively comfortable and I have syrup I can take if I need it. I won’t lie and say I don’t get pain as I do, especially if I overdo it or do things when I I know I shouldn’t, but I no longer live with that constant teeth gritting, relentless nerve pain. You don’t have to either. It was my gp who got me sorted out as my Neuro at that time was dreadful. Please see your gp.

As the others have said, we’re all in this together and nobody here will ignore you. We may not know each other in the street but we are here for each other. Take care of yourself.

Cath x

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Hi there Anne, the folks on here always lift our spirits eh. I can’t add anything to what has already been said, but I have to tell you how marvellous you are. This MS is a beggar and sometimes the ‘system’ of Neuro consultants, ms nurses, physio’s, pain clinics etc etc do let us down. I share your frustrations with the Neuro consultant. I sometimes wonder if they have completed their training!

I felt it was the beginning of the end when dvla revoked my driving licence. I remember silently screaming that it’s folks over 80 who should lose their licence but my daughter soon put me in my place. "Mum, you can scream, shout, write and fume as much as you want, but you can’t change the law and you cannot drive anymore. So what do you have…taxi’s, buses, trains, boats and planes. Nothing can stop you getting about. Of course she was right, I bought a scooter that folds into our car boot, hubby drops me off in town and I have my freedom to do what I want. The wheelchair lets me get around shops without having to wear myself out walking or carrying.

Neuro pain is one of the worst types of pain. Gabapentin, Pregabalin helped the pain but I gained over 3 stone in a year! The pain killers were changed when I broke my ankle. It’s morphine based and I’ve not had any side effect, no serious pain for a year now, as I take the meds regularly to keep on top of it. All I can suggest Anne, is for you to keep on at your GP for referrals to the right people to relieve the pain you suffer with.

Good luck Anne, hope you find things improve for you soon. x

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Thankyou so much to Michelle, Anthony, Pat, Pam, Cath, Poll, Farr13 and Chrissie52. Thank you for taking the time out to write back to me.

Just to say I am hanging on in there. I have upped my pregabalin a little. Seeing the dr this week so I have written down things to remind myself to tell her.

I am looking at getting some sort of mobility chair. I live in a very rural area, so it has to be robust. Just for outside use, I use a cane indoors. I would also like something that I can fold down myself and put in the car. Does anything like that exist. I have been doing some surfing and getting vbery confused and tired now. It doesn’t take a lot!

I hear what people say about keeping moving (Ithink that was over on Everyday Living). I totally agree. I am at the point though when each step is so painful. My feet have become very high arched due to the MS. Even with special soles that doesn’t make it any better. My legs are slow and stiff. So should I keep walking or start using a chair (Daddy or Chips?). What do you guys think?

Also exercise. I need to do some. Exercise can never be bad for you. However, settle an argument for me. Will it keep me mobile? Will it keep me walking. Can we actually turn this thing around with exercise? I don’t think we can. I think we can try and keep mobile but in the end the disease will, for some, mean that you can’t walk anymore. Hubby think if I keep exercising I can build up the muscles, the strength and keep being mobile. Who is right?

Signing off for now peeps.

Will let you know how I get on.

Be interested to hear about the chairs, scooters etc I really am overwhelmed with it all.

XX Anne

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Hi Anne - I understand what you are asking. I feel the same. Up to last October I did aquafit, Pilates, and yoga. I had been attending these classes for approx 5 years, and just kept pushing myself. I eventually decided to stop when I couldn’t get up from the floor and walking from the car to the venue ( about 25 mtrs) became very slow and laborious. Then after aquafit one night I had 4 people helping me to my car - one behind even having to lift my leg up to walk.

So I am doing physio exercises now - but will this help? I was doing loads of exercise before and I still progressed.

I am going to continue though because I am a fighter and I make as much use of my scooter, rollator and stick as I can. I just stay positive and concentrate on what I can do.

So I agree with you Anne - will exercise really help?

I will carry on with physio as long as I am able to - I am sure it is better than doing nothing and there is always hope.

Take care

Jackie x

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Apart from the fact that MS tends to take what it wants, I do believe that if exercise/physio is focused on areas of weakness (core strength for example) it can help us make the most of what we have and worth persevering. Like most things concerning MS it does depend on the individual and we all know our bodies best.

The Barts Blog has an interesting view on the value of exercise.

http://multiple-sclerosis-research.blogspot.com/2016/02/brainhealth-clinicspeak-can-brits.html

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Hi Anne

Will exercise work? Wow, that’s a difficult one, and I could be totally wrong here, but this is my thoughts.

I think exercise (however small) not only helps physically, but mentally as well, by putting your mind in a good place…but (there’s always one,) will it keep someone with MS mobile?

I personally don’t think it will, as I don’t think we have choice with MS, meaning if it wants to process, whatever we do, it will do its worst.

Please don’t think I am being negative, as I try to see a positive in everything, but I am a realist giving my take on this horrible illness.

Pam.

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Hi Anne

I agree so much with Whammel, if it wasn’t for that silly stuff on the pole (profile pic), I’m guessing I’d be a full time wheelie user by now, I was so weak and couldn’t even touch my toes. So thankful I managed to cram that in before MS really messed things up - the strength & flexibility I had at least made me think I could deal with it. Not so BUT I would have crumbled for quicker

OK, it’s not pretty and I even need a stick/crutches/walker indoors but I’m just about on my feet even if not for long

Sonia x

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Hi Anne,

Last year I had conventional physiotherapy exercises which I did every day for two months. It didn’t make any difference.

I thought that because MS is a neurological disease and not a physical problem, that I should be doing something that engaged my brain with my body.

I took up Tai Chi. These are simple excises but take a lot of practise to get right. It’s mentally challenging. I don’t spend any more time on it that I did on the physiotherapy but the results have benefited me enormously. I’m more mobile, it gets me out of the house, I’ve made new friends and I can see the benefit as well as feel it.

I’ve heard of someone who does Tai Chi from a wheelchair.

Of course, I’m not saying this will work for everyone but that’s goes for medication as well!

Have a look at Neil Webster Facebook. He’s my teacher and he’s taken videos of me. You will have to scroll down to 4th February 2015, but you can see how the exercises has helped me.

Anthony

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