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Help the pain after weekend away.....

I’ve been seeing my other half about 5 months. He told me very early on about his MS diagnosis. We’ve just been away to Rome on a spur of the moment romantic weekend away. It was very warm and we walked miles and miles. He did incredibly well, walking up hundreds of steps and walking 10+ miles some days.

Now we’re home he’s really suffering with loads of leg pain. Obviously this is all fairly new to me and I’m just learning about the condition. He was in so much pain last night he barely slept. What do you guys recommend that might help? I’m trying to get him to just rest and sip his green tea and take occasional pain killers… But what else is out there?

Appreciate all your help and advice!

Hi

Your partner should maybe speak to his MS nurse about neuropathic pain drugs, if that’s what he’s experiencing. If it’s muscle pain from the unaccustomed exercise, it might be different needs to drugs though. Maybe massage would be more useful.

Or many people use magnesium; especially magnesium oil sprayed onto the skin and massaged in might help?

You could see if there’s a hydrotherapy pool near to you, Gentle exercise in warm water can really help.

Something to help him sleep would perhaps be useful, either he could try to get a prescription from his GP, or try Nytol (after checking with a pharmacist that it goes with any of his current drugs).

You could look up information on this site (see the About MS tab), or the MS Trust (type in what you want info on and MS Trust in your browser - there are many, many webpages available). I’d avoid random googling as the information may not be reliable.

The other thing you could look at is to see what’s available in your area, look at the Get Involved tab at the top of this page, scroll to the bottom and see the search box for Find Support Near You. There may be an MS centre, or help available from nearby sources.

It sounds as though your partner is lucky to have you. Hopefully you’ll have many more trips away, but try next time to avoid utterly ruining his legs for when you get home!

Sue

Thanks so much Sue. All really useful tips. Yes it’s certainly been a learning curve. He just quietly gets on with it and it’s only afterwards he tells me how much pain he’s in or how much damage he’s doing, so it’s something I need to be careful of and watch out for in the future, not encouraging him to push himself too much!

He’s been really struggling to sleep with the leg pain which is causing a catch 22 situation. He’s not resting well and allowing them to settle and heal, and because they’re not getting any better they’re causing him trouble sleeping! Will look into the magnesium spray and massage etc as well as something to help him sleep.

On a different note, has anyone had any success using CBD oils? The kind that Holland and Barrett etc are now selling? I’m all for trying the natural, alternative medications that seem to have lesser side effects so just wondering what people’s experiences have been like?

i really want to encourage to become active with groups like this. He’s a bit down at the moment and told me yesterday he feels like an old man (he’s 33) so I think he needs to see how much enjoyment people with MS are still getting out of life! Thanks for the support.

Tom

i really rate the ms therapy centre at Trafford.

i found it a few years after my diagnosis.

the main reason i go is for HBOT (Hyper Barric Oxygen Therapy).

but the best therapy of all is the huge round table in the common room.

we sit around drinking coffee and eating cake, having a gossip, getting/giving advice to each other.

do see if there’s one near you.

carers are welcome too and can get one of the therapies themselves.

meanwhile remind him to pace himself.

we all tend to really go for it at times but we pay the price the next day/week/month.

it’s a nuisance but i try to alternate busy days with quiet ones.

try to find info on the “Spoons” theory because it gives a good picture of the importance of resting after exertion.

good luck to you both.

Carole xx

Hi Tombull, you must be a fab person to want to know more about MS for your partner of 5 months. There is lots of info via pdf or hard copies of leaflets & booklets from this site Home page, under Publications.

A few days, consecutively walking around Rome City is definitely a No No for MS patients. Heat and Cold can affect MS, making symptoms magnify. Well, you’re noticing the effect Rome had and hard lessons were learned. Most of us have done it, believing we can, but the body just shuts down to no energy, even pain in hands to hold a drink. However, it sounds a nice sightseeing tour around the fab city, and for a romantic break, you’d both enjoy most of the time, if not every minute. MS is a reason to enjoy what you can, when you can. Eating a healthy, balanced diet, plenty of soft drinks and moderate exercise becomes your partner’s daily life and you may enjoy a healthier lifestyle together.

We, as sufferers of the incurable, and sometimes untreatable brain disease, often learn by trial and error. Certainly the MS Nurses do their best for their patients and put the appropriate help into place. Managing fatigue, vision, weakness, bowel, bladder, kidney issues, tremors, cognition and, sometimes out of character or unacceptable behaviours as well as mobility difficulties.

For some types of MS there are DMD drugs to help to slow down the brain & nerves damage, for some types there’s no treatments (yet…but new research looks very promising)

Some people are affected more but there’s no easy way to tell how MS will affect each individual.

You’re both young and the future is not as dark as it was for MS 10 years ago. There’s greater understanding, greater facilities and a terrific support network.

Worrying about the unknown is futile & causes anxiiety. No-one can guess if or when MS deteriorates, if it does then you’ll have options as a carer. Employ someone to help, use the many nhs facilities and, importantly, don’t lose sight of your own ambitions.

This site is a great support 24/7 too. It may not be be a rosy picture exactly, but believe me, it could be a lot worse. So get living life & making memories!

Chrissie x

Hello my wife Lisa got diagnosed with Relapsing Remitting approx 2 years ago

the ms nurse based on scans and various symptoms believes Lisa has been undiagnosed for approx 10-15 years (she is 51 now)

Lisa is really struggling daily with back pains that are at their worst in the morning but have only presented themselves over the past 3-4 months

recent mri scan last month shown no new lesions or activity

Pain is both in the form of stiffness and stabbing pains and is quite unbearable (I don’t say that lightly as she is quite a tough nut)

She does lots of stretches as per advice given and tries to go to yoga twice a week when fit enough

The MS nurse over the last 6 months has been increasing the following and is currently on

300 mg pre gabalin each day (3 x 100mg tablets 3 times a day)

100mg baclofen Each day

DMT is copaxone for nearly 6 months now

The pain is really getting her down on top of usual symptoms like fatigue, ms fog and balance issues to name a few

but this pain is daily and pretty much unbearable at the moment with no end in sight

the ms nurse says she will,continue to increase the pre gabalin to a max of 600mg per day

is this time of pain ‘normal’ and just got to live with it because I am not sure she can go on like this (very depressed)

any advice and or similar stories would be much appreciated

Many thanks in advance

Dave