I have had MS for 17 years and I’m now unable to sit, stand or walk unaided. I use a powered wheelchair to get around and a stand aid plus 2 carers to for transfers.
I take 10 mg of baclofen in the morning, 10 mg at lunchtime then at night I take 30 mg of baclofen, 8 mg of tizanidine and 10 mg of amitriptyline all for spasms and nerve pain.
The tizanidine knocks me out and helps me get to sleep although I still have broken sleep. From early evening to mid morning my spasms are worse. If I wake up in the night the first thing that happens is a spasm goes all through my body from my toes to my hips, sending my legs into rigidity. One or both of my feet wobble when this happens as well. My hands clench and my arms spasm into full stretch with pain through my left shoulder.
My left hand is permanently clenched and my right hand is rapidly following suit. I don’t have much pain when resting but my left shoulder is very painful when moved and the range is very restricted.
When I am transferred out of bed in the morning the carers bend my knees and they snapped into a painful spasm around my knees which then eases off.
I also suffered depression in the summer and was prescribed sertraline 50mg which helped considerably. I have been on a lower dose for a week and have another week of taking it every other day and I will then stop taking it. My circumstances have changed so much in that I no longer work and I am living in a nursing home. This has greatly reduced my stress and the depression has lifted.
I saw my MS nurse last week and discussed the possibility of CBD oil with her. She told me she couldn’t recommend I take it but had heard nothing but positive about it from other patients and certainly wouldn’t recommend I didn’t take it!
So, I have bought CBD oil 250 mg oral drops of 2.75%. I have decided to start with five drops three times a day.
I have just taken my first dose but discovered it is impossible to tell how many drops went in my mouth! But anyway, I’ve started so I’m happy with that. I would be over the moon if the spasms reduced and I felt less pain in my shoulder. I am also hoping for a balanced, positive mood. If I could cross my fingers I would!
I’ve had a very sedentary day today (aka lazy!), but my body has felt very relaxed.
Emotionally it has been quite challenging and a few tears have been shed so I’m not sure it’s the best day to judge on that level.
I’ve given up trying to count drops so I’m just squirting oil from the dropper in a most unmeasured way! I’ve taken 3 doses.
Looking forward to seeing how I sleep tonight….
I didn’t sleep brilliantly last night and still had quite a few spasms. However, I do feel that my body has been more relaxed throughout the day and it’s now early evening and I haven’t had spasms yet which is great.
Although my emotions have been very up-and-down today I have been feeling quite strong and positive and definitely not falling back into depression.
So far, so good…
Sleep last night was still broken but not in a stressful way and I still felt quite rested today.
Emotionally much more stable today and I am feeling generally calm and relaxed.
I did some exercise this afternoon for the first time in a long time which felt great. I used the physio bike which pedals for you, so nothing too strenuous!
I really do think my spasms are reducing in intensity and frequency. My left hand definitely feels less tense. Really pleased so far.
Sleep was much the same last night – still broken, but I do feel the spasms are reducing although definitely not gone.
I had a crazy busy day today and was out and about all day but I had energy and my body felt mostly comfortable.
I had a gentle shiatsu massage today, which on top of yesterday’s exercise is helping me feel good about my body.
Thankfully, today was a lazy day. I had quite a lot of spasms this morning but the pain in my shoulder is reduced.
I have managed to keep the routine of taking the drops three times a day and there are definitely no ill side-effects.
Emotionally, I’m feeling good and physically fine too. I slept for nearly 2 hours this afternoon – I was tired! I had some crazy dreams though…
My mood has been good for the past couple of days and I feel very relaxed. However the spasms in the night and the morning have been really quite bad. I have now run out of the CBD oil so have ordered a new one of higher strength as I feel I need it.
My new 5% Hemp Bros oil arrived today. I had 3/4 dropper at lunchtime and another before bed. It tastes great (cinnamon) and I’m glad to be back on it to see how I feel. It’s a bigger bottle too so I won’t run out so quickly. Let’s see…
I’ve been taking the oil twice a day – morning and evening. I must confess to not feeling great. The spasms at night are really quite bad. I’m waking up at three, four, five, six and the second I open my eyes I am in painful spasm.
I’m also pretty exhausted during the day. I have a feeling coming off the antidepressants and everything going on with my life (selling and clearing my flat, starting the process of ill-health retirement amongst other things) is catching up with me.
I think from tomorrow I’m going to try three times a day and see how that goes.
So, last night I only woke up once and didn’t suffer painful spasms. Could it be down to the CBD oil? I am sticking with three doses a day and keeping my fingers crossed…
Well, I am in no doubt that the CBD oil is helping reduce my spasms. I have slept better and my spasms are fewer and less painful.
I have decided to try capsules rather than oil from a dropper as I’m finding the taste a bit much. The Hemp Bros oil does have a good cinnamon flavour but I’m finding even that a bit overpowering. I have ordered some superstrength capsules from Healthspan. They’re vegan which is fantastic.
I actually missed a dose today because I was out and about. Hopefully I won’t notice too much tonight.
The missed dose did seem to make a difference. I didn’t sleep as well and had more spasms again which supports what I thought about the oil working.
10 days later
The super strength capsules from Healthspan arrived (15mg) and I was so much happier just swallowing a capsule.
However, the spasms at night and in the morning night have been getting worse. The second I open my eyes my body goes into a huge, painful spasm. Yesterday morning I decided I’d had enough. My sleep was broken and stressful. I had a little bit of the Hemp Bros oil left so took another dose of that. I couldn’t believe it but instantly felt my body relax.
I went straight back online to buy some more but discovered it was no longer available! I messaged them and they replied saying a competitor has accused them of marketing it as CBD oil on Amazon (which they are not and which everybody else is doing the same – calling it hemp oil for Amazon).
So, I went to Holland and Barrett and bought 2 30ml bottles of 5% CBD oil (it was on half price special offer!). I took another dose before bed and have just had a spasm free night and woken up this morning again without spasms. It doesn’t have a flavour – just a slight herbal taste. Hopefully I’m not going to find that overpowering at all.
Plus, my low mood brought on by the cancellation of a long awaited operation lifted yesterday evening as well.
So I can absolutely conclude that I need 5% oil from a dropper for it to work. And I am over the moon. I will be taking it three times a day from now on. It’s taken a bit of experimentation but I really am blown away by the results.