Living with Fibro and ME.....any tips?

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Living with Fibro and ME.....any tips?

Postby Purpledot » Thu May 30, 2013 8:14 pm

I have Fibro and ME and am really confused as to how to manage living with both.

I know exercise, within limits, is good for the Fibro, but detrimental to the ME. I just don't know what to do for the best.

Do any of you have both, and, if so, do you have any tips about how to strike a happy balance between the 2?
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Re: Living with Fibro and ME.....any tips?

Postby denys » Thu May 30, 2013 8:21 pm

moderate exercise is good for ME too, but the only way to deal with either/both conditions is to pace yourself, my daughter has ME and she started managing by starting out doing very gentle exercises for a very short length of time and gradually building the exercise up until its moderate but she never pushes her limits as she knows she will end up making things worse.

Ask to be referred to an ME clinic and they will be able to help you manage using techniques that you may not have heard of :fingerscrossed: and :goodluck2: :goodluck2: :goodluck2:
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Re: Living with Fibro and ME.....any tips?

Postby fibro-lu » Fri May 31, 2013 8:29 pm

hi,

FMS and ME

never know where one ends and the other starts :crazy:
both have elements of each other

simple example: am I tired because of the ME or because of the pain from FMS?

different docs did ask me over the years:
"which one is the most bothering you (at the moment), the fatique, the pain or the depression"
my standard answer developed into something like:
"they are all interlinked, when one improves the other two do too, when one gets worse so do the other two"
their response is usually something like a nod and a sigh

a bit in lalaland :crazy: and keeping that in mind would think: the less I worry the better I am, because worry turns into flares etc and the journey starts ...

hope that helps
all the best :cow-wave: Lu
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Re: Living with Fibro and ME.....any tips?

Postby FluppyPuffy » Fri May 31, 2013 9:00 pm

Purpledot wrote:I know exercise, within limits, is good for the Fibro, but detrimental to the ME.

I've recently completed a number of sessions about how to live more effectively with CFS/ME and the techniques used in that are very similar to those used for FM. It's basically finding what your capabilities and limits are, then working with them, pacing yourself whilst making very gradual changes to increase what you are able to do.

Exercise isn't detrimental to CFS/ME, just as with FM, it has its benefits, but needs to be approached in a suitable way. The starting point tends to be doing something for a short while, distance etc with the aim of gradually increasing things. I started off with doing some very short walks in the morning on the days I'm not out :dogrun1: and doing some very gentle stretches later in the day. Over a number of months I have increased the distance I walk and increased the number of reps I do for each stretch.

There are differences between the 2 conditions, but they can be very subtle. It's only thru doing this course of sessions that I have worked out what indicates that FM is trying to take charge and what indicates that CFS is doing the same. Even now tho, I can still read things wrongly and end up :banghead: :banghead: :banghead: :banghead: :banghead:

Denys's suggestion about a referral to your local CFS/ME Clinic/Service is a good one to look into as they could help you come up with suitable strategies that make a difference to you.
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Re: Living with Fibro and ME.....any tips?

Postby Purpledot » Sat Jun 01, 2013 12:48 pm

Thank you so much for your lovely replies everyone! :-D

My GP did refer me to a local ME/CFS clinic, but they refused to see me as I also have the Fibro! :nono: He is now re-referring me and stressing that I need help with pacing, exercise levels etc. Hopefully they will see me. ;-)

I have no idea which condition causes which symptom, to be honest. All I know is I feel rubbish all the time and things are getting worse. I have a major problem with balance, and am starting to stumble and nearly fall over on an alarmingly regular basis these days. I have no idea whether that's caused by the ME or the Fibro, but it is certainly my most debilitating symtpom, along with the constant feeling of total exhaustion. However, my pain is becoming worse and more widespread, too, which I think must be the Fibro. :cry:

I wonder why these 2 conditions so often go hand and hand, as they are supposed not to be linked in any direct medical way? :?: :?: :?:
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Re: Living with Fibro and ME.....any tips?

Postby FluppyPuffy » Sat Jun 01, 2013 1:22 pm

There are different thoughts about the 2 conditions, some believe they are 2 separate entities whereas others believe they are different ends of the same spectrum. There are a number of associated conditions that tag along with FM, incl CFS, but at the moment there is very little known about why this happens with them.

It's strange that the CFS/ME clinic would refuse to see you because you have FM. When I was referred and went for my initial assessment, I was simply told that if I thought it was more FM~related then I would need to be referred to that team. If you can get a referral to your area's clinic, hopefully they will be able to work with you in finding ways to help you live with it alongside your FM. It's not easy at first, but each little bit you learn can help make things that little bit easier to manage.
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Re: Living with Fibro and ME.....any tips?

Postby Iceskatemum » Sat Jun 01, 2013 7:23 pm

After chatting to some people who know me and who have suffered from ME I approached my GP (as fatigue is one of my main problems) and asked if I could have both FM & CFS/ME and would it be beneficial to go to the ME clinic.

She is one of the group that feels the two syndromes are on the same spectrum and felt that as I had already been dx with FM there was nothing to gain from seeking further advice on CFS/ME.

Now although not "officially " dx with CFS/ME I do tend to tell people that I have both FX and CFS. It seems they accept the fact I can't do things due to CFS but only associate FM with pain. IF only it was only pain it woudl be so much easier to treat.
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Re: Living with Fibro and ME.....any tips?

Postby MichelleJ » Sat Jun 01, 2013 10:09 pm

I have both m.e/Cfs and fm. You do need to be careful with exercise with both conditions as it can make them both worse if you do too much. But get it right and it helps. For me, I found swimming the exercise I could tolerate. It took some doing though. To begin with I couldn't tolerate even being in the pool so asked for a referral for hydrotherapy so it would be warmer. They taught me some simple water exercises like raising my arms up and down using an armband as a weight, same with my legs bending in different directions. Walking in water, squatting etc. from that I moved onto my local pool and continued these exercises. Tried to swim and could manage only 2 metres But I persevered and had got up to 14 lengths of the pool at the point I relapsed a month ago. That was 350 metres. I was doing that twice a week in half an hour each time. Now I am starting to build again to get back there.

I also find an exercise bike helpful and again prior to my relapse I was up to 15 mins at a time. The physio helped me with that. She referred me to the gym for exercise on referral but I have yet to go as relapsed before I could. My induction is on Friday now. I pay £21.50 a month for off peak unlimited use of gym and pool. I would suggest a physio referral and ask to see one with experience of graded exercise and of fibro and m.e. I couldn't get going at all without physio intervention in water and on land as I kept overdoing it.

My walking is very limited and I have to use a wheelchair a lot of the time. I seem unable to Improve this beyond around 30 metres at best most of the time as I find my pain increases and fatigue is horrendous.

I hope this info helps you hunni x
Dx with fibromyalgia m.e/Cfs and asthma
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