spasticity?

New diagnosis and before diagnosis
1

Hello there,

I haven’t been on here for a while, as I’ve been feeling better.

In the past few weeks though, I’ve had some problems creeping back.

Re my context, I have some peripheral nerve damage (one dead motor nerve and small fibre damage in the legs). Apart from this, I also have some symptoms that come on when I get too hot and can appear on one side of the body only, but this has not been checked out by a neuro so far. Last time I saw a neuro, I was told to take B12 for a while and see how it went (over a year ago now).

Yesterday though, something different occurred. I was in the garden and my right knee just seemed to go haywire. I have had minor aching in the knee for a long time, and have ignored it, thinking it was probably my joints tiring (I’m fiftyish). Yesterday, the knee gave me a considerable amount of pain, and was so stiff that I had a lot of trouble walking.

Still thinking that I’d overdone exercise or something I relaxed for a while but didn’t come out of the sun. The pain and stiffness persisted.

Then, when I did go inside, within a matter of ten minutes, the pain/stiffness had gone and I could walk normally again. There’s no doubt in my mind that the heat had brought it on. I already experience what I can only term as a joint weakness in my ankle when there’s too much heat in the kitchen, but I’ve never had pain/stiffness like this before.

Although I’m not diagnosed with MS or B12 deficiency, I wondered if anyone could tell me whether what I experienced in my knee could be spasticity.

Many thanks

Astro

2

Hi,

In my experience, spasticity is a pretty permanent thing - i.e. the muscles are permanently tighter than they should be.

It doesn’t go away when you come in out of the garden!

Tina

3

Hi Anitra,

thanks for the feedback. Maybe the gardening just doesn’t agree with me.

Astro

4

Hi astro i also have perpheral neuropathic pain which have been told will be with me for life now i am just waiting for my mri to rule out ms or anything else i suffe from spascity (sorry spelling rubbish ) my muscles tighten up so much i walk like a robot so my daughter says very painful too.I am no doctor but your knee could be a joint problem even cartalidge i would get it checked out .best wishes

5

Thanks Sparky,

I should get it checked out, I know.

I’m one of these people that has a severe allergy to doctors (another reason why I haven’t been to see a neuro since I moved country last year).

I think there might be a bit of arthritis or something there. I just found the sun connection so weird, and couldn’t believe that was the same thing, as I was having to walk with my leg to the side (peg-leg fashion) to try and reduce the pain to a bearable level.

Also, I’ve been managing so well, dealing with the problems through diet and supplements that I’m avoiding getting back on the diagnosis merry-go-round.

Think you’re right though. I will probably go see a generalist and get the knee checked out on its own.

Cheers

Astro

6

It could be some kind of neuropathic pain. I find (temporary) exposure to heat can aggravate some MS symptoms, but usually not spasticity in particular. As I said, I tend to find spasticity quite a long term/permanent change in muscle tone - not something that comes and goes in a few minutes.

But adding that you’d been doing the gardening, rather than simply sunning yourself, does mean the problem could be purely mechanical, and indeed it’s the gardening that’s the culprit.

Tina

7

Hi Anitra, I hope you don’t mind but I think you seem quite knowledgeable on ms and its symptoms so I will ask you a little more on spasticity. Currently I’m waiting second mri after my first showed possible demyelination. I have neck pain which started on the right in March now it is my whole neck with numbness on the left side now. But my queries is I also have developed a painful back at the bottom and my ankles and knees are also painful. The only way to describe it is stiff and It takes me a while to get going, like everything is locked up after sitting or relaxing for a while. I have a burning patch on the left of my back at the bottom which I have had for a few weeks now. I have other symptoms of nystagmus which gets worse when im hot. My neck pain doesn’t go away at all even with zapain. Can can spasticity work like this? I also have had 3 episodes in recent years my latest being in Feb of not being able to walk as one foot left one last time had such immense pain which came on in a couple of hours but left me unable to put my foot to the floor. But what I guess I’m asking is can spasticity “relax” once you get going again and then reappear after resting? I look like a 90 year old trying to get from sofa to kitchen and after sleeping I have to be extremely careful coming down the stairs. I am 43 I had my reflects checked all came back ok but my mri I am having is of head neck and thoracic spine. Sorry if I have rambled on!!! But I always associated spasticity with being permanent

Lisia

8

Hi Alisia,

I don’t mind you asking, but I’m not sure I have any nice, definite answers for you.

MS pain can be very complex, and from a variety of causes.

“Stiffness” sounds like spasticity, as I think that’s exactly how most people would describe it in everyday life. Even those of us who know the medical name for what we have is: “spasticity” would probably describe the feeling as “being stiff” - but particularly the muscles, not joints.

Spasticity can itself cause pain, because the muscles don’t relax properly, even when you’re asleep, so it’s fairly predictable that they don’t like this very much, and start to hurt. :frowning: For people who have spasticity, it’s usually a chronic problem, but that doesn’t mean it never varies at all. It may respond to gentle stretching, or a hot bath (though some people with MS can’t have a hot bath because they’re intolerant of heat), or, if not yet too ingrained, just from keeping on-the-move.

Burning pains, however, don’t sound like spasticity. This sounds more likely to be nerve pain - also very common with MS. Nerve damage can cause signals to get garbled, which the brain may then interpret as pain. It’s a sort of built-in safety mechanism, because if the brain doesn’t understand something part of the body is trying to tell it, the safest thing is to tell you it was pain - the standard signal something’s wrong. Unfortunately, if it was just a garbled signal, and NOT a cry for help from part of the body, this results in uninjured things still hurting.

Finally, you can have musculo-skeletal aches and pains that are nothing to do with spasticity or nerve pain. MS can cause poor balance, altered gait, and weak core muscles, among other things. So imagine what happens if you’re permanently “walking funny”, or “sitting funny”. Eventually you tend to get aches and pains, from muscles and joints having to do what they were not designed for.

Even for diagnosed people, it’s not always easy for them or their doctors to work out which pain is caused by what. I think my pain is mostly caused by spasticity, but I’ve been treated for nerve pain, “just in case” - which had no effect,so we (my neuro and I) concluded it couldn’t be. But sometimes the best (only) way to prove the type of pain is which drugs it responds to. If anti-spasticity drugs don’t help, then the pain probably isn’t linked to spasticity, and so on. I know this all sounds a bit arse-about-face; usually you’d determine the cause before trying to treat it, but with MS, it’s not always like that. Sometimes it’s try to treat it, and find out what works - then you know which type of pain it must be.

Sorry if it all sounds horribly hit-and-miss. With MS it’s often a case of: “Try this, and see if it does anything!” If you’re lucky, it improves something right away. If you’re unlucky, it might be a lot of to-ing and fro-ing, trying different things, before you find something that works.

The good news is that there’s very rarely only one thing that can be tried, so if you get no success with one type of pain relief, it’s always worth trying another. And also you should not need a confirmed diagnosis to get pain relief.

I’d never heard of Zapain - are you in the U.S? I think here, we call it Cocodamol. Won’t work for nerve pain, but might help with spasticity - but only to mask the pain, not to address the underlying muscle tightness.

Tina

9

It’s very difficult for those of us without diagnosis for the cause of our problems to understand what is linked and what isn’t. Thanks for taking the time to give this overview. Obviously there are never clear cut an dry answers. Somehow it makes me feel less stupid for posing silly questions.

10

Believe me, those of us with a diagnosis often don’t know what is and isn’t linked.

Unfortunately, having MS doesn’t mean you get no other health problems the rest of your life. Whether it’s serious, or just minor niggles lots of people get, we’re still at the same risk.

One former regular here (I don’t know where she got her data, but she was a “reliable” poster) said the commonest cause of death amongst people with MS was ignoring something that had nothing to do with it. That’s quite understandable, as people with a long-term illness - especially one with such a wide variety of possible symptoms - tend to assume anything that happens must be due to that. But it’s not always - you can have more than one health problem at once. So diagnosis doesn’t mean you can completely stop wondering: “Is it related?”.

Tina

11

I have had zapain Tina im in uk it is codine 30mg it worked for me for muscle cramps not using it. Now neuro put me on gabapentin. instead.

12

Codeine and paracetamol, according to Google?

I used to have those, but never under the brand name “Zapain” - they were just called cocodamol. I now have codeine and paracetamol separately, as it’s easier to tweak the dose to exactly what you want/need.

Never found either any use for cramp, though. Instead I have Baclofen, Diazepam and quinine for that (just a few things, then).

Tina

13

Yeh forgot the paracetamol bit. had amitriptyline for cramps too

14

Hi Tina yes it is codeine but for me it doesn’t seem to work. I’m having a very bad day today feeling quite sorry for myself really which is not the attitude I like to take. I’m trying so hard to keep working I’m a carer in a dementia home and love my work but am finding it so hard with all this pain and numbness. My back is so bad today my neck I can cope with but I have called the doc. I don’t want to waste anyone’s time seeming like I am mingeing or moaning but I am at the end of my tether with it all. I have been offered to be signed off but I like being at work and live alone so can’t afford to be off

As I said before second lot ofMri on Sunday but I don’t know how much longer I can keep pushing myself before a have a complete breakdown emotionally and physically :frowning:

Just need some answers so I can explain to my boss why I feel so bad r

15

Sorry, but there comes a time when your health has to come first. If you carry on as you are, you won’t have a choice whether to be off sick or not - the decision will be out of your hands.

I don’t know if you mean you couldn’t afford financially to be off (you’d get SSP, but I accept it’s not much - but neither is pay in the Care Sector, usually). Or whether you mean socially?

Liking your job is great, but not an excuse for ruining your health. I’m afraid there are no prizes or thanks for playing the martyr these days.

I have to say I worked through both the relapse that led to my diagnosis, and the diagnosis itself (except the day I was actually at hospital to collect the news). BUT, my job was just office work from home. Sitting on the computer and answering the phone is nothing like as physically demanding as you’re trying to do.

Less than two years later, I was made redundant anyway (non health-related) so obviously I’d gained no extra credit for “bravely struggling on” in the face of serious illness. I was expendable, just like the 700 others.

And I’m afraid that’s how it is these days, in most professions. When the boot’s on the other foot, they won’t think: “Oh, we can’t let her down; we owe her! Look how she struggled in when she was sick!”

If you do go on to be diagnosed with MS - which I hope not, obviously - you will almost certainly have to adjust to a different way of living, which includes that “carrying on regardless” is not always going to be an option for you. And yes, it probably will mean reduced circumstances sometimes, or all the time. Sorry.

Tina

x

16

HI Tina

Well spoke with doc on phone and now I’m to try naproxen went to work and my boss could see I’m not good so told me to go home and take the day as annual leave. You speak wise words and my boss and 2 other colleagues all agreed my health is more important Will go back to work Friday if I’m feeling any better. It’s just so frustrating. When you are normally so active, I’ve worked all my life and now I can’t even find the motivation because of pain and fatigue to even dead head. A few plants in my garden. Well tomorrow is another day, let’s hope this pill works thank you for taking the time to answer my ramblings it is very helpful listening to the points from total strangers thank you so much :slight_smile:

17

You’ve been told to take sickness as annual leave? That’s generous of them (not). Are you not entitled to sick pay?

I believe it doesn’t pay out for the first four days anyway, which might be why they suggested taking it as holiday (still get some pay).

However, I don’t want to be a prophet of doom, but you could well be out more than a day - more than four days - with a thing like this, so when would you be officially off sick instead of on holiday?

If you use up all your holiday being ill, you’ll have no real holiday when you are (hopefully) feeling better and actually need it.

Had a long debate about this (sickness as holiday) in another topic, and there can be situations where it does work out better for you, even if it’s a mit morally/legally dubious.

But a day’s holiday - even if welcome - is hardly the solution if the real problem is you have/are suspected of having MS. You won’t be better in a day. I won’t put it as strongly as you won’t be better ever, because all being well, there will be times when you feel a lot better than now. But if you’re going through a period of disease activity - medically known as a relapse - it’s not like a sniffle, and a day off fixes it.

I hope you get some answers soon, as work have to recognise that if it is what it looks like, the odd day’s holiday isn’t going to be a workable strategy for managing it in future. Not everybody is off work a lot, so it shouldn’t be assumed it’s inevitable, but if you do get properly sick, you’ll need more than the odd day off to cover it.

Tina

x

18

Again thank you Tina you are right a day or two off won’t cure it but for now a little rest is better than none. I can’t really do much until I get some answers fingers crossed this next scan will help with that :slight_smile: