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Hi Everybody,

Firstly would like to apologise for posting again, but short of ringing my MS nurse every time i have a question (which i don’t think is a good use of her time) i don’t know who else to ask!

First of all im in the midst of a relapse - not a major one compared to others i have had. My vision is blurry (have been refered to opthamologist) and vertigo has reared it’s ugly head again. Coping with it fairly well and feeling a lot better than i did 2 weeks ago. However over the last few days i have some new issues, im not sure if they are linked to the relapse, or MS in general?

If i stop moving for more than 5 minutes i start shivering with cold even if the heating is on? Also the baby and ring fingers on my hands feel cold all the time no matter how hot i am? My eyelid is constantly twitching which is really annoying - want to rip it off. My pain seems to have intensified drastically, used to be bad at night in bed but now feeling it all day every day (which is pleasant!) I am already taking the max dose of pregabalin. So if anyone has any insight into these delightful ailments please let me know! I’m guessing they are probably relapse related but not sure about the pain as i understand that pain is not usually included in relapse criteria?

Also while im moaning! I wanted to start doing yoga/pilates to help keep joints supple and hopefully improve flexibility and fitness levels. I have now inquired with 3 instructors about classes, mentioning that i have MS so would need to start slowly due to balance issues and they have all said i cant attend group classes as i would slow them down, could have 1 to 1 classes at twice the price. Should i just keep my mouth shut about the MS and turn up and do the best i can? Would do swimming but can’t bear the feel of water on my skin due to numbness/burning. Anyone got any reccommendations for a good alternative to yoga?

Sorry again for rambling on, if only there was a magic pill to cure that (sure my hubby would buy them all!)

Laura x

Hi Laura

I have recently ended a relapse with similar symptoms to the ones you describe. I agree that the eye twitch is very annoying although I didn’t have the shivering one I do suffer from areas that feel cold or burning hot most of the time. Hopefully some of these delightful symptoms will subside along with this current relapse. On your second issue regarding joining a yoga class I have periodically done yoga and pilates without any problems my instructors have been very understanding and if I am unable to do a particular move or need to do things a little slower I do it at my own pace, I don’t see how you would hold the group up unless they stopped teaching on your account. My suggestion is not to tell them and see how you go on. I do go swimming but if my skin is feeling bad I too have to miss it. Remember, its good to have a moan but things might just look bad at the moment because of the relapse so keep positive.

Sue

Thanks Sue, i am trying to stay positive but the pain is wearing a bit thin now, and the eye thing is beyond annoying

I am going to take your advice and just turn up (when im feeling better) and do what i can, I would love to go swimming but my burning/numbness on my stomach and back has not gone away since it started in May last year, even on a high dose of pregabalin. Even showering is a grin and bear it situation. so think im stuck with it, starting to have an effect on my relationship as i cant bear to be touched (have you or anyone else suffered with this??) - dont really see a way forward, but i shouldn’t moan too much things could always be worse.

Good to hear your at the end of a relapse, hope your feeling better, long may it last x

Hi Laura

Those yoga instructors aren’t being very helpful. Mine asks everyone to fill out a questionnaire about their health at their first session so she can be aware of past injuries, back problems etc and can tailor the postures to them. For example she will advise some of the class to sit out a certain move if they have high blood pressure or to hold it for a very short time.

She is an old friend of mine so that helps but she is fully aware of my MS and if anything I have to tell her to not mollycoddle me so much ;-). Many of the class are more elderly than I am and we all have health issues which is why we go to the class.

I really hope you can find an instructor with whom you can have that kind of relationship. It does almost beg the question why are they teaching yoga - they clearly are not following the spiritual teachings of yoga judging by their attitude. A fair proportion of my yoga class is dedicated to the spiritual side of yoga and inner harmony/peace/love for fellow man; I am quite sure my yoga instructor would never turn anyone away unless she felt they would be putting themselves in real danger.

I hope you recover from your relapse very soon. I am also recovering from one but am my own worst enemy. Just when I start to feel better I overdo things and my leg plays up again! I will get back to yoga when I am certain I will be able to get through a session without it being obvious there is anything wrong!

Tracey x

Hi. Just wanted to say that I do pilates every week and in no way slow the class down. Find a different instructor (one who’s not after the cash maybe…). Don’t let on to begin with but a good instructor should be more supportive. In my class some members sit out some exercises due to dodgy knees/shoulders etc. Any new members possibly just move more slowly, maybe doing 6 while others do 10 for example. So please don’t let this put you off. I love it. Keeps me supple, helps my balance and the physio was impressed with my core…!! Take care. Ann

Yes will definitley keep it on a need to know basis, will pesevere trying to find someone as i need to do something once this relapse has passed. Feeling a bit like a caged animal at the moment! x

Just realised the title of this thread makes it sound like a celebrity magazine! It was meant in the sense I have ‘a list’ of problems…please help! Really not interested in celebrity! Just felt the need to clarify that! X

Hi

Regarding the Pilates/yoga classes, my wife used to do Pilates classes regularly and the instructor would always have an easier & a harder version of each exercise. And there was never any problem sitting one out if you needed a break for a couple minutes. So I reckon it would be worth giving it a try, and just have a rest if you need to (though personally I’d want to find an instructor who is a bit more supportive.)

Dan

Thanks for all the yoga related advice.

Just wondering if anyone has suffered the heightened sensation issue? How they dealt with it? I can’t let anyone touch me on my back or stomach at all. Admittitaly there are days which are worse than others, but it’s always there and always uncomfortable. Its affecting my life as i find im avoiding hugs with the kids and hubby which is really getting me down. Like i said in other post im on a high dose of pregabalin and it has never made any difference? Is there a non drug related way of helping it? I have had sensation 11 months.

All advice welcome, thank you x

Hi laura, I had it a few weeks back during an attack which affected all my right side. But it felt like I had fallen downstairs and got a massive carpet burn on my spine. Thankfully it lasted a few days and went, but it stopped me wearing a bra because everything rubbed on it. I was in bed for most of that week with fatigue and horrendous vertigo, so it wasn’t too bad, but getting comfy in bed was a beggar! Sam xx

Ps, I just took more gabapentin to get me through it really, not sure if it really worked or not to be honest with you xxx

If I were you, I would go and see my GP and get some blood tests done, just in case the eye twitching isn’t MS - it can be a sign of several things, including e.g. calcium deficiency.

With regard to the sensitivity thing, maybe ask to try either a different med than pregabalin (some people fine gabapentin better, and vice versa - we are all very different) or ask for something extra, e.g. an anti-depressant that helps with nerve pain - it’s possible to use two at once. There were no meds available when I had the crazy hypersensitivity thing, but then it only lasted 3-4 months so wasn’t something I had to live with very long. I did find that some fabrics were easier than others and that wearing smooth insoled shoes helped a lot. Good excuse for a new wardrobe??

Do give your MS nurse a call about the meds. Your GP probably won’t do anything without her say so anyway, so best to speak to her first to speed things up.

As far as those yoga teachers go: best avoided quite frankly! Do keep phoning round - there will be someone with the right attitude out there somewhere. Maybe see if there is an MS Therapy Centre near you? They often run yoga classes.

Karen x

Thank you x