Last reply 4 months ago
Struggles

Hi all, I’m probably just having a whinge, sorry! I know there are people suffering far worse than me & that makes me feel worse! I am normally a really happy, smiley person but recently this hasn’t been the case, I find that I am always angry or unhappy & snappy with people.

I have been struggling with my own thoughts lately, so much so I had a really bad day on Saturday. I have made an appointment to see a counsellor as I recognise I need help with this. I also am very frustrated with myself as I feel some of my symptoms are getting worse. I understand that this will happen as I have been diagnosed with SPMS but I stupidly thought it would be a gradual thing & that it would happen that slow & gradual I wouldn’t notice (if that makes sense!)

I would love for someone to tell me that this is completely normal behaviour & that I will come out of the other end & be myself again??

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cameron
5 months ago

I have no quick answers, but reading through your posts it does seem that you have had very little professional support in all this. As you are SPMS you aren’t being called to nurse drug reviews, but what about other support? You do seem to be facing this alone. I have mood swings and nothing brings them on faster than mulling over unanswered questions/worries about how the MS is going. Equally, nothing dispels gloomy thoughts faster than a proper talk with either an MS nurse, my physio or the neurologist. Experience also tells me that these mood swings worsen whatever symptoms I’m worried about. Whether this is a result of MS brain damage, or whether it’s a normal human reaction to stress I don’t know. A bit of both, maybe? IMO you are in need of real information, based on a professional’s assessment of your MS. Perhaps you’re overdoing things? Perhaps you need to exercise more? Perhaps you need to be on antidepressants or meds to relieve symptoms? A professional would give you some answers and help you to get some kind of context for how things are. Our inner thoughts + Dr Google are no help at all. I would say, definitely follow up on getting counselling but also press for a visit from your MS nurse. It sounds to me as if you’ve been sold a bit short. xx


clairg1
5 months ago

Hi Cameron, thank you for your response. I have seen my MS Nurse once only, and was told that I would get 6 monthly appointments which they would alternate between my nurse & neurologist. I have received my first appointment but it isn’t until September.
Yes you are right, google is the worst!
I have had it a bit tough too in other areas of my life (my son who’s 16yrs old, has finally been diagnosed with Autism after approx 13 yrs of my trying to tell professionals there was something not quite right) so I know it isn’t just my problems that are contributing to my mood change but none the less, it is ultimately my problems that have started my bad moods/depression etc.
My appointment with the councillor is 1st May so fingers crossed they will tell me to pull my bloody sock up, put on a brave face & get over myself which is what I desperately need to do ha!


vixen
5 months ago

Hello @clairg1, sorry you are feeling low. Sound like seeing a counsellor is a great step forward, especially if it can be sustained longer term. I feel personally that stress has more of an impact on my day to day life than anything. If I am, preoccupied with thinking about MS or my symptoms, this invariable makes them worse. I have real variance of mood too; not really extreme, but laughing uncontrollably at funny things. And having less tolerance of small, gripes moans of others around me. I was diagnosed 2017 and spent about a year processing everything. It was when this processing stopped that I moved in to a more moody phase. I don’t think it’s noticeable to others, but it is to me.

I find that with all the support I have, it is still me as an individual doing battle with the world on a daily basis. That I do find upsetting. So I get you totally. Sending you some special thoughts and good wishes x


cameron
5 months ago

@clairg1 – I don’t think it’s a question of ‘pulling your socks up’. That implies that being super-strict with yourself will make things better – don’t think that’s about to happen! It’s more to do with having sufficient knowledge about how your symptoms fit into the general pattern of MS and not assuming that you’re on a downward spiral. The nurse should be a) able to give you some reassurance and b) deal with specific problems. That (in my experience) is the beginning of getting some control back. If you have issues with walking, it would also be well worth while getting a gait assessment from a neuro physio. There are various neuro physio ‘tricks’ to help retrain the brain to make new pathways, similar to the exercises used for stroke patients. Not a quick fix, but part of a package to help you be the best you can be. There is a lot of help out there – PM me if you want further details. xx


peterfrancis
5 months ago

Hi Clairg

I too have SPMS and feel frustrated, pissed off and angry most of the time, even on better days where I am able to at least manage a few more walking steps than normal I still feel like I am ready to explode in a fit of rage.

So you are not alone in the way you are feeling. I was diagnosed with Rapid SPMS and it literally came from out of nowhere, hit me like a tonne of bricks, developing new symptoms on a daily basis. The medication I am now on and have been taking for over a month seems to have slowed it down in terms of new symptoms arriving. Just that the symptoms that are here are a real pain in the arse to deal with.

This all apparently is normal behaviour for people with MS, wish I could say to you that you will feel “normal” again but I can’t sadly.


chriscamp
4 months ago

I have SPMS and identify with all the comments above, especially feeling grumpy and sorry for myself. What med is peterfrancis on? I saw my neurologist just this week (but an annual review) who re-assured me that my symptoms were “normal” for my MS, but there didn’t seem to be any real help other than self management. But he did prescribe me pregabalin to try and reduce neuropathic pain. Is anyone else on this?? Also, I live in East Herts, UK. Is anyone nearish me? Female, age 62.


peterfrancis
4 months ago

@chriscamp

I’m currently taking 4 Gabapentin tablets a day along with 1 Baclofen a day.


seanachai
4 months ago

Hi @clairg1

I am RRMS but can assure we all have those periods and it’s hard to shake the cloud. I personally have tried to manage through lifestyle and alt therapies.

I do believe exercise, whatever you can manage with or without support really helps with stress and consequently emotions, might be worth exploring. I too only have an annual with MS nurse but I think if you reach out explain where you are they will see you.

Regarding the counsellor, it’s a good step, my only advice is to try and see a counsellor who specialises in dealing with people in our or similar situations; counsellors vary dramatically and you don’t want to be disappointed after your visit.

Thanks S


mickm
4 months ago

I also have SPMS. My decline was also rapid. Within about 8 months I went from walking with a noticeable limp to walking with a hiking stick for support.
As I got worse I required two hiking sticks. Then I swapped the sticks for wrist crutch. After a while I was dragging my feet so into a wheelchair I went.
Every day was a challenge with no relief from my MS symptoms. I also had to stop working as a Mechanic and live off my savings.
My decline was like a stock market bear market graph. Ups and downs but always going down.
Walking and balance was not my only MS symptoms I also had a few of the old favourites like tingling numbness pain etc.
My Neuro suggested Lemtrada. He said I had nothing to loose. He likened it to a wild golf swing. It might miss or it might just connect and pay off.
So here I am 6 months post round one lemtrada with one more treatment required in 6 months time.
No more bladder problems, no more pins and needles with associated pain and sleepless nights. Mostly in the mornings while my batteries are still charged I can walk about the house unaided. I’m back at work . I still carry 2 wrist crutches for safety but find it easier to walk with just one. I go to the gym 3 times a week and do full body weight workouts and have tons of energy.
When its all said and done I still have MS however since lemtrada treatment when my batteries run down I find I recover quicker so I can manage and control my day.
Why they say Lemtrada is for rrms and not recommended for spms is beyond me.


gerbil
4 months ago

I have had RRMS since 1990 and SPMS since 2015. But I’ve gone downhill so fast, from using a stick to needing a Walker inside and a mobility scooter outside. I fall virtually daily, either at home or in cafes, in the middle of the road or anywhere. I just don’t feel I’m me any more, this isn’t how i am! I’m only 52 and feel i ought to be in an old persons home.I could scream. The Physio signed me off her books as I changed so many dates that the Physio Assistant was coming because I had Hospital appointments and the Physio thought I should focus on the Physio! The NHS not being joined up and working against itself!
I just don’t know what to do with myself.


clairg1
4 months ago

Hi all,

Thank you all for your messages. It’s good to hear it’s not just me that feels like this, though I know there are plenty of people worse off than me! Which makes me feel worse for thinking how I do, if that makes sense.
I’m hoping the councillor that I see helps. Some days I feel really sorry for myself & as much as I try to snap myself out of it, nothing works. I watched a video this week on YouTube of a lady from ‘Pixiwoo’ from 2017 & she pretty much summed up how I’m feeling so I know it’s not just me that feels like this – I suppose it’s an effect that finding out your life as you knew it (and your freedom) has changed & never going to be the same again!
I’ve heard lots of people mention lemtrada, I’m going to mention it to my nurse. As I haven’t had any medication previously, when I mentioned medication to her before as one of my many questions at the beginning, she pretty much said that the only way there would be any possibility of medication is if I had a relapse so had to just expect & live with my symptoms otherwise so it’s probably not something that will be discussed much!


sigmadelta
4 months ago

Hi clairg1,
Yeah it’s a bad place you find yourself in.
Like gerbil, I have gone form RRMS to SPMS in a matter of months.
Its a lottery really.
You may well stabilise, you may not.
And to be brutally honest, no-one you see or speak to medically has the faintest idea either.
I have seen 3 consultants, and had several MRI’s and they all just shrug their shoulders and tell me it’s ” MS”..lmao.
I say “Which is?” and they say ” Well we don’t know the cause, only the symptoms.”
So you have joined an elite club, welcome.


sherryak
4 months ago

Hey, Clairg1! I used to be a happy person then I was diagnosed & I could tell a difference in my mood shortly after that. But then I survived a car wreck 12/9/12 (they drilled into my brain to relieve pressure before the ambulance got to the hospital) & after a month in la-la land, I started being aware of things again. Since the car wreck, I have had a very flip attitude about life & have been much happier. Since the car wreck, I have had a few down times when I let myself wallow in the misery & cry for a little while. After a good sleep (afternoon nap or through the night), I’m usually back to my happy self & carry on. But you haven’t been blessed with a brain injury & you’re dealing with the attitude-altering that MS causes, so it is GREAT that you’re seeking professional help. When I was first diagnosed with MS, my neurologist prescribed fluoxitine (generic Prozac) because MS is known to go hand-in-hand with depression. You definitely need to get a handle on it before it takes over. You don’t want to lose your normal self completely & just add on the the depressing things that you’re dealing with. Life is too short to be miserable or depressed. Get a handle on it so you can get back to normal. I wish you luck.


debsydubs39
4 months ago

Hi Clairg1
Try to not beat yourself up
What you are feeling is completely normal
Just go with it
You will get there in your own time
I am so happy you are seeing a counsellor, I swear by mine
I was on Prozac for depression but took myself off it, was on it for years
I try to work through things
I had lots of awful thoughts boy oh boy
It’s been my son and I since my diagnosis in 2007
He just left me to live in Tokyo
So just me and my rescue greyhound Lola
I have not lived alone for 26 years – phew
Just keep up the chatting and peer support ok
Don’t ever think you’re whinging ok
One thing at a time
I may investigate Lemtrada myself
Bladder issues for me, lack of control, when you’re fatigued the last thing I can do are pelvic floor exercises
Foot drop and left hand weakness
Anxiety and sleeping disturbances but now I’m not working, if I don’t sleep so be it, I listen to my body now
I’m 51 years old
I wear a foot brace
Waiting on a personal alarm watch to be funded through NDIS
Then I will feel safe
I’ve even packed a suitcase for emergencies which includes what to do with Lola
I stick to the MS Society in Melbourne and my neurologist in Geelong
Had to apply for income protection payments from work
Try to join a peer support group, I now swear by it
Take care ok


cameron
4 months ago

My GP put a slightly different spin on it. She told me that everyone diagnosed with a long term condition undergoes a change in their mental state. I found that reassuring – if, as she suggested, this would happen to people with a whole range of conditions, it is in fact ‘normal’ and not something to be agonised about. She says that the antidepressants get you ‘thinking in the right way again’. This reassured me. If it really is a question of re-tweaking your mind rather than facing personality meltdown it seems less of a mountain to climb. Just my thoughts. xx

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