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Newly diagnosed struggling with anxiety and sleep

Hi all

I am totally new to this and only just been confirmed diagnosed with MS early this week after 3 weeks of anxious waiting.

Since GP appointment I have struggled with lack of sleep and and anxiety, unfortunately after the doctor gave me Fluoxetine, I had 2 weeks of hell as the Fluoxetine actually made me worse and depressed, now going through withdrawal , sleeping on average 3 to 4 hours if I’m lucky a night even using sleep pills. Nothing seems to help.

six weeks ago I was biking 86 kilometres a week and running 18 kilometres a week, and taking part in Duathlons, I can’t quite believe where this has come from

suppose what I am asking, is there light at the End of the tunnel , did anyone else suffer with anxiety attacks and lack of sleep when first diagnosed?

Hi well yes its quite normal to feel how you are feeling. gosh do they still give out prozac? My friend was on that stuff it turned her into a zombie and basically she had no interest in her life or her children and just existed. this was way back she did not have MS but was severely depressed. Its been 2 years now she has finally come off this stuff and feels like a million dollars has a new life too, had no idea there was a world out there lol.

Its probably wise you came off it, i hope with the aid of your GP.

OK your in shock. suddenly you have been told you have a life changing disease and well its hit you like a ton of bricks.

Lets look at it this way. six weeks ago you could bike ride 86 kilometers. BEFORE your LABEL. Now suddenly you have a label of MS and cant.

Ask yourself is it because you have deteriorated in six weeks, or is it because no you have MS you feel you CANT do it?

MS should not suddenly just change who you are per se, yes give you a huge shock, but you have been diagnosed really quickly and if its RRMS your next step is to ascertain what medication you should be on to slow down the disease.

Carry on your life as normal. Your anxiety is stopping you sleeping, lack of sleep is the worse thing for us. taking sleeping pills well they will just make you feel like poop all day.

You now need to find a way to deal with the news. Maybe go for walks i assume you can, get some fresh air, talk to friends and family about your fears. what are your fears?

Having a diagnosis is good as you know what your facing and can now set a battle plan in place. get ACTIVE, deal with it, find out what is good for MS what is not.

stressing is not.

go for a bike ride if these things are possible what i am saying is just do your normal thing.

anxiety is the pits, when i was having episodes i knew it was an attack, deep breathe and i would focus on something else, like play a stupid game or i went out with the dog for fresh air anything to stop my braining from thinking negative thoughts.

oops sorry i do tend to waffle on. but yes anxiety is normal its how you deal with it that counts.

I would get some help to talk this diagnosis through, how it will affect you, what meds to take, should you be on a special diet, etc etc. GET into ACTION, and kick this MS butt lol. xxxxxxxxxxx

Thank you so much for your reply and advice, it really does help.

I’m planning on walking the dog tomorrow and hopefully venturing out somewhere on Sunday, your right fresh air and walks really help.

im glad I stopped the Prozac too, would much rather manage it with exercise and a healthy lifestyle which I have been doing for years. You are right, just because I have a diagnosis label, doesn’t change anything , I can still go for a run or cycle ride, it’s still me. Think it’s just the shock and how quickly it all happened.

Thank you for your support it really does help to know things will get better.

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Well it’s morning and yet another sleepless night. Total 2.5 hrs and that’s with a sleeping pill, I just don’t know how to switch my body off and sleep and relax, tried relaxation videos, hot milk, reading, Sleepio app, music, really don’t know if to try another anxiety drug, but worried after the reaction I had to Prozac, don’t think I could go through the side affects again, already lost a stone, anyone ever been on anxiety tablets , had problems finding the right one that works, or do I just try and stick this out. It’s been going on now 4 weeks , desperate to relax and sleep

You probably know this stuff already, but just in case. https://www.mstrust.org.uk/news/focus-sleep-problems-ms?bblinkid=187577387&bbemailid=17121918&bbejrid=1236369569

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Hi Sop

I have been in a similar position and my sleepless period was triggered when going through my MS diagnosis in the early stages. My doctor put my symptoms down to a similar experience such as PTSD. Like you I was unable to sleep but I was caught up in a vicious circle of worrying about not being able to get to sleep. It was a terrible stage of my life which lasted for about 18 weeks in total and when I say i had no sleep, literally I had no sleep! 30 minutes was all I was getting at times.

In my case, my mind was constantly racing, constantly worrying about my job, my kids, my wife, my mortgage payment and my health. I was being investigated for having “probable” MS but in the words of my neuro at that time I was “not disabled enough”. She wanted me to go away and come back when I had had a greater significant relapse. The way she said it made me feel as though a big relapse was coming and this really worried me.

I managed to ditch that neuro and moved to a hospital trust in another city where my new neuro was more proactive with treating MS. He looked at my clinical evidence and determined that previous episodes which I had were probably relapses and via another MRI scan found new disease activity (white dots on brain) and started me on a DMD. (Tecfidera)

When I started on the treatment I started to feel more in control of what was happening to me, I was able to relax more, accept the diagnosis and start to get my life back on track. My sleep improved but it wasn’t an instant thing. I literally had to re-programme my mind on what sleep actually was. What I mean by that is I had to go to bed around 9pm on an evening, not have anything to eat or drink after 6pm. Ditch TV and not watch or read anything 30 minutes before going up to bed. I had a “weird sleep ritual” as my wife calls it.

Once in bed I had to close my eyes and try to think about nothing. I read somewhere that “fake” yawning could trigger a chemical response in the brain and in some cases help a little. I think it did help for me. One of the big things I learned though was that once I was awake I had to get up. It didn’t matter what time it was, 2AM or 7AM, I was up, a new day had started and I was awake. I had to treat the bedroom as a place purely for going to sleep (sorry wife).

Overtime and after finally accepting my diagnosis (I think I was in denial) things fell into place. I started to meet people at local MS meetups where I spoke with others who were in the same boat as me and my worries lessened. I cannot say that my sleep pattern is 100% as we all have things over time which wake us up and disturb our sleep patterns.

You sound like you are on quite a new MS journey and I thoroughly recommend getting along to any local MS groups or reaching out to others with MS as in my case it really did help.

One last thing, always remember you are the same person and you will be able to do the same things as you used to do. You may need to slightly rethink the way that you do those things though. I told a close friend once that I was worried about not being able to do the “normal” things in life anymore and that friend said to me “what the f*%7 is normal anyway”

Take care

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Thank you whammel , I had not come across this page, so I will take a closer look , appreciate all the support thank u

Hi number 08

thankyou for your reply, it really does help to speak to people that know how I feel, really appreciate all the advice on this forum, it’s a great support,

ive not been told about my local ms meetings so I will message my ms nurse and ask is there one local in Wrexham,

‘thank u

perfectly normal to be anxious after such a recent diagnosis. are you still cycling and running or have you stopped because you think that because you have m.s. you shouldn’t be doing these things? – hope that’s not the case.

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Hi sop just told myself I have ms felt unwell for some time before my friends and family made me go to my gp it’s a shock to the system couldn’t believe it at first shock anger denial then why me I’m slowly coming to terms with it I guess we have to carry on hope your ok it gets easy to live with if we fight on

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the trouble is your trying too hard to sleep. the more you worry about it the less you will. I bought myself a heat pad for back spasms. now when i find i cant sleep i put it on and lie on it and let myself drift i go to my happy place with memories of my husband and i wake up suddenly and have done 5 hours. I find sleeping hard anyway as i have nocturia and need to pee a lot at night lol.

sleep in the day if you have too for now. your going through a process i call it grieving in a way as it is. Your worrying about all kinds of things. If you go out in the day have a cycle ride, maybe your body is used to this routine, and now your depriving it of that, so your healthy and used to cycle a lot and your body would sleep as you had tired it now. now you are not tired in body and it needs that if that makes any sense at all lol.

just go out and get exercise, and slowly you will relax. maybe you need a bit of counselling to get over the diagnosis it is a huge change for you but not yet. You have a lot of time to make plans for the future.

If you have a partner the other good thing for sleeping is a errrrr a bit of nooky exercise lol.

for now try not to worry too much sleep will come but you have to stop stressing over it. if that makes sense, your giving your brain, relaxing videos, warmth of milk, reading, music etc etc, when all it wants is its old routine back. xxxx

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That’s a good point, I never thought of that, as you said before I was doing all this exercise and now nothing, just trying to make my body relax. So it doesn’t know what to do,

‘my husband would be happy about the nookie bit too ha xxxx

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I’ve stopped to be truthful. Only sleeping average 3 hours a night 4 if I’m lucky ,so pretty tired, I’m walking the dog, but thinking yes I should get my but back out on the bike !

Thank you subzero, yeh it’s only been a few weeks and I am naturally hard. On my self, I manage to get out to town with my husband yesterday, and he’s gone back to work today, so I’m going to be on my own some of the time today, which is a first in 3 weeks, a little scary , but slowly getting there. This forum is really helping x

Morning all

Saw the GP last night, who said not to give myself a hard time that I still need to use sleeping pills to sleep. Just a little concerned I will become dependent on them. But I have to trust her judgement.

Got my first counselling CBT appointment in 2 weeks. Ive taken on everyone’s advice in this forum, and if I wake I go and read, hot milk and try not to lie there thinking I’ve got to sleep. Think I got about 4 1/2 hrs last night so an improvement.

GP also reckons the anti depressants should now be out of my system it’s been 2 weeks, so the anxiety in the morning is myself working myself up. So just got to try and calm down, been using feeling good app if anyone else is looking for a relaxation app to use. Sleepio app for night is quite good too.

‘Going to try a swim tonight fingers crossed , bye all

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Hi interesting post about sleep sop , I too have had problems sleeping before I knew I had ms . I was on sleeping tablets to help those sleepiness nights , but they can help some people but please becareful if you drive as they do effect the next day after taking them probley best using the sleep apps and as people have suggested warm milk reading or the good old fashioned way of counting sheep lol , but it’s no laughing matter getting no sleep I hope things get better for you sop

hi hope you slept better after your swim. x

Hi crazy chick

i did actually sleep better, hurray ! Still took a sleep pill, but felt my body wasn’t fighting it as much. I walked the dog in the day, and then did 10 lengths in the gyms pool, even though their heater had broke and the pool was freezing. Small steps each day but I think things are slowly progressing and improving. I’m getting the best advice on this forum and I am so grateful for it. Still dread mornings, but at least if I’ve slept longer I am stronger to get through the morning.

‘How’s your videos of your wildlife in your garden , have you had more visitors? Bet the hedgehog was back for his tea x

Thanks Subzero

unfortunately at the moment don’t think I would get any sleep if I didn’t take a sleeping pill. doctor told me not to drive, so I am relying on lifts from family if I need to go anywhere, which is a bit isolating, when family are all in work.

‘I’m hoping when I start the CBT therapy I can start weaning myself of the sleeping pills and sleep naturally. That would be wonderful.

Just wanted to update on how things are going, in case anyone else has been struggling newly diagnosed like I have with anxiety and lack of sleep.

‘I’m very slowly improving, small steps, as managing to get out to places, gym for a swim, walks with dog, even did the couch to 5k app day one the other day. Planning on a cycle ride today too. Sleep still a problem, but learning to except that to expect to get 7 to 8 hours a night right now just isn’t going to happen. Trying to cut down slowly on the sleeping tablets, as it’s been 4 weeks now. I’m getting about 4 hours broken sleep, hopefully over time this improves. Still wake anxious, but finding meditation app helpful. No appointment with the mental health team till the 17th Dec which is very frustrating, as I needed it weeks ago, not 9 weeks later. Still on a positive note, snippets of my old self coming through, so if anyone else is struggling the same, try and talk about it, this forum has been very helpful. Some great advice.