Forum

Pain

Hi All,

This is a long shot but I am wondering if anyone has any ideas.

I am having a relapse of old symptoms. I have nagging ache pain (muscular I believe) in my neck and shoulders (when really bad it is also in the back of my head) it is worse on the right (I am right handed) I wake up and go to bed with it and it’s really getting me down. It’s worse when my fatigue is bad. When it’s bad my arms feel heavy.

I have tried Paracetamol, Ibuprofen, Naproxen, Co-codamol & Tramadol non of which are at all effective. I was given Baclofen for foot spasms which I hadn’t tried as I was warned it might effect my walking. I have at my mums suggestion taken it to try and initially it helped was taking 5mg at bedtime to try to sleep better without the pain. After 2 days it wasn’t working so I increased to 10mg. I am currently taking 5mg in the morning and 10mg at bedtime, not sure how much it is helping as I am still feeling the pain. My GP said that was ok for a few days but she doesn’t want me to take it long term.

I have weekly Aromatherapy Massages that I started having to manage this symptom in March when I had a relapse. It was completely under control and normally helps when my neck and shoulders start to get tight. At the moment it just hurts more when I’ve had one. I have massive knots in my Trapezius I have booked acupuncture to try Friday at the suggestion of fellow MSers and my MS team. I use my mindfulness meditation CD everyday.

I have a spike mat and pillow which I lie on which helps, as do baths and tiger balm but all are very temporary relief. I need to get this sorted as I am off sick and don’t feel I can go back until this is better. I have spent the afternoon in bed because it was so bad today.

I spoke to my MS Nurse on Monday who said I’m doing everything they would suggest and has made me an appointment with the Physio but that’s not until the 25th. Will see/ chat to GP tomorrow or Friday just be interested if anyone else has this and how they manage it.

Snowqueen x

Tyr lying ona tennis ball similar to the roll you have but goes deeper and you can lie on your back and roll around on it. If you find a tender spot hold it for a while, the sharp pain does ease. I then put an ice pack on the area. This helps me the most. Also I use a heated lavender wrap at night which also seems to ease sleep good luck xx

Thanks May & Zoe

Snowqueen x

Just a quick comment on differing views of prescribing baclofen. My GP’s are happy for me to stay on this for as long as I want the general consensus being if it isn’t doing any harm why risk coming off it for my spasms to start up again. I’ve been taking it for five years now, I take 10mg twice a day and I know others on here take much more.

Best wishes

Jan x

Hiya

No it’s not nice this pain business.

I have various types of pain and I have the ones you are describing ( I think ). Neck and shoulder aches. The shoulder was resolved with physio excercise and ultra sound blasts by the physio over a 3 months. A low dose of Gabapentine has helped the neck pain.

Just my experience - so far.

Take care

Marty

Thank you Jan, I tried not taking it last night to see if it was making my fatigue worse or actually having an effect on my symptoms. The result I have had an awful nights sleep, my neck and shoulders are bad and I feel nauseous (new). Feeling so fed up I just want this to all get better now.

Snowqueen x

Hi, I don’t know if it’s relevant, but just in case… I’m on a combination of gabapentin, cocodamol and Ibuprofen. Started on 3 x300mg gabapentin and increased the daily dose by 300mg each week until I hit a dose that works for me (2100mg day )

Really helps me. Hope you can get sorted

Janet xxx

I too have neck pain and back. Diazepam helps me as it relaxes the muscle and also helps me sleep.

I have been given baclofen to help with my walking and if I forget to take it then my walking is worse. I have been told that the increased tone in my leg prevents normal flexion and the baclofen reduces that tone (not all but to a degree). I take 20mg 3 times a day - so 60mg in total.

Maybe in your case the tone is making up for weak muscles and that you need that tone to stand and walk.

Moyna x

Fully agree, Jan.

Baclofen is a fairly standard first line treatment for relief of MS spasticity, and I can’t really understand any GP saying they don’t want you on it “long term” when you have a lifelong condition.

Although it’s not a painkiller per se, I’ve discovered by trial and error that most of my pain is spasticity related, and Baclofen goes a long way to relieve the pain of permanently tense muscles - not by just masking the pain like a painkiller, but actually forcing the muscles to relax.

There is very little evidence that tolerance (developing immunity to it) is a big problem with Baclofen. I am finding it’s no longer as effective as it used to be, but I sincerely believe that’s because the spasticity has worsened (I’ve been diagnosed five years now, so wouldn’t expect literally no change), so I don’t think it’s anything to do with developing immunity to Baclofen, but that it has more to combat now!

I am one of the “higher dose” people, at 60mg a day, which my initial neuro wasn’t happy with, as it’s a high dose for someone who (like me) appears minimally affected. However, my GP took quite a different approach, and told me: “Take no notice! You are very conservative with medicines, and I know you wouldn’t take them if you weren’t finding it necessary.”

She is quite interested in theories of pain, and believes that if you don’t intervene to address it properly, you don’t “learn to tolerate it”. On the contrary, there’s a vicious circle, whereby if it goes unaddressed, you actually prime your system to be MORE sensitive to pain (not less), thus increasing problems in the future, because you’ve now got a lower pain threshold.

She is also very conscious of the importance of quality of life NOW, and that it makes no sense to hold off drugs “in case you need them later”, if that means having a miserable time of it now. What’s the point of always worrying about later, if you’re in pain today?

I’m certainly not an advocate of taking everything, just for the sake of it - for example, I tried Gabapentin, but got no benefit, so weaned off. But I certainly believe in being as comfortable as I can, for as much of the time as I can, which means not trying to soldier on without medicines that help, because of “saving them for later”. If I’m worse later, we’ll have to deal with that when it comes, but I’m not putting up with untreated pain because somebody claims it’s “too early” to treat it properly.

Tina

x

Same as you Moyna, and same dose too.

My neuro wasn’t happy about me being on so much, but if I try to cut down, my walking deteriorates and pain increases, so I don’t want to fiddle with the dose I’m on.

My new neuro that I’ve had the last few times doesn’t seem so worried about the dose anyway. These idealistic notions of what we should and shouldn’t take are all very well, but if I can walk three miles at 60 a day, but without it I just can’t, there’s little doubt in my mind that I’m doing the right thing.

Proof of the pudding and all that.

There hasn’t been any more quibbling about it for quite some time, but if there ever is, I’m minded to attend my appointment without taking it one morning, just so they can see.

“Do you want proof of why I take 60 a day? This is what I’m like when I don’t!”

Tina

Yeh i get spasms in my neck and shoulder sometimes i could scream when the should goes into spasm. I had really bad neck ache this week and shoulder pain. I use diazepam at night, BUT i also use the old fashioned muscle heat cream cant remember its name lol… 3 times a day its a bust it makes it feel so much better.

My doctor said a lot of these spasms are due to being tense, or walking badly with the MS. I use this cream, and my heat pad its bliss.

I dont take pain killers are they make me feel sick.

Diazepam at night, and the cream and heat during the day.

hi snowqueen i had much the same symtoms as you they sent me to the pain clinic i take tramadol was taking the max per day for nerve pain i take pregabalon at the time 300mg a day coud,nt tolerate any more was advised to pace myself and rest morewitch i have done and it helped made a huge differance but my ms is progresive so ive had to increase the pregabalon to 200 twice a day

i suffer on the days when i do to much

the help is there lean on your gp if they cant help directly get them to refer you to someone who can G

Hi Tina,

It was from one of your posts that got me to ask for higher dose and they were happy to give it to me. Before taking the higher dose I was offered Tizanidine to take alongside the baclofen but that just put me to sleep within about 15 minutes!

People on here seem to say that baclofen gives you muscle weakness. I have been told that baclofen reduces the tone and if the muscles are already weak then this weakness is more exposed without the tone. Baclofen in itself does not make muscles weak.

The more I walk then the more baclofen I take because exercise increases my tone temporarily. A lazy day in the house I find that I dont need my full dose as the tone is not too bad.

Also the little FES that I have really helps with the tone in my calf muscles.

Moyna x

Thank you everyone, my GP has now given me more Baclofen to last until I see the MS physio.

I started acupuncture today, was really odd a couple of places she said would hurt I felt nothing but other places made my overactive reflexes jump. Got some seeds in my ears to work on the sleep and pain so we shall see.

Also got my sick note extended and was shocked to be told it’s until 14th September. I really hope I don’t need another month off although at least it takes the pressure off and I believe I can go back quicker if I feel fit?

Snowqueen x

Hi Snowqueen,

You cannot be forced to stay off work, unless your early return would have safety implications (e.g. as should have happened with a certain bus driver/bin lorry driver, who, as it turned out, was known to have a history of blackouts).

However, some workplaces are super-defensive (so they cannot be accused of damaging your health, quite apart from any risk you may pose to others).

Some years before diagnosis, I was on long-term sick, with what I now believe was all related to MS, but at the time called: “depression”. I was medically cleared to go back, and actually wanted to go back, because I’d started losing money (pay is reduced after a certain time on-the-sick), but work were not actually happy to have me back, pending further enquiries as to my health.

This was then made worse because the HR person who was dealing with it herself went on long-term sick, with depression. Nobody covered her workload, and I found my correspondence asking to come back, and protesting about the “unreasonable obstruction” causing me to lose money had lain unopened in her in-tray.

I’m not saying this is what will happen to you, but just thought I’d mention that unfortunately, it’s not always as straightforward as going back whenever you’re ready. They might want further assurances, to cover both themselves and you. It’s pretty bad luck for the person dealing with it then to go sick as well, but that sort of thing is the story of my life, unfortunately.

If you didn’t hear it from me, you probably wouldn’t believe there was any employer so incompetent that a sick employee couldn’t return because the HR person dealing with it wasn’t there to open their mail, would you?

Tina

x

Gosh Tina that’s rubbish, I am nervous what my two bosses will think but it has been longer already than I though I’d need and I do feel proper poorly at the mo. I know I need to go back on form or that will likely cause issues so will just have t try and chill and take a day at a time.

Snowqueen

Trouble is SQ the more you stress over it the worse your neck and shoulder will ache. I find that when i am stressed mine gets really bad. Try to relax hey i know how hard that is, but it does get better. xx