A balancing act . .

[Fennella02]

Hi to everyone.

I am a 48 year old mum, slim, constantly active with a long history of Lupus/UCTD. My approach to stiff, swollen joints has (successfully) been to keep on the move, literally all the time. I rarely sit down during the day (I tend to stiffen up and get very cold easily) and have always been a keen walker -it's one of my favourite activities so typically stride out with the dog for a couple of hours a day. Over the past few months, I have been experiencing increasing exercise (walking) induced pain in the muscles of my hips, thighs, upper arms and chest and I wonder about Fibro. My ability/desire to walk has understandably dwindled over time and I am now much slower. I didn't walk at all last week as my children were at home and had none of the pain but it has returned with avengeance with the return to walking and I don't know whether to persist or surrender. It goes against the grain to give in and I worry about not maintaining my muscle mass (recently assessed 4/5 proximally & distally). How do others work out what is beneficial exercise and what is potentially harmful?

Many thanks for reading. Clare 😊

[Hopey]

I have been diagonised 2 years ago am now 50 with fibro and conective tissue disease at the moment the ctd is under control but the aches pains that you are discribing sounds alot like mine. Walking or any major exercise like digging doing the gardening causes the aches and pains to be worse than normal before i started plaquinel and lyrica i couldnt even sleep on my side because of the pain in my hips shoulders and lower back i am stiff and sore all the time and have just been to the rhuemy and she assures me that the feeling of being hit by a bus is fibro i was reading a snippet of info on the web that stated with any sort of exercise to take it slowly and if it starts to hurt stop low impact exercise is better apparently but the just of it was to take things slow and listen to your body i feel your irritation as i myself like things done like yesterday and it so irritating when doing the stuff you like to do causes pain take care i dunno if this helps 😊

[Fennella02 in reply to Hopey]

Hooey, thank you so much for your reply and yes, we do sound very similar. I have a couple of questions which I hope you don't mind me asking. Is getting diagnosed with Fibro likely to be to my advantage? If so, how do

I find a Dr who is sympathetic to Fibro rather than dismissive? Is reducing the intensity of exercise (by exercise, I am referring to no more than walking the dog) better than taking painkillers and bashing on? I take virtually no analgesia (except pleuritic pain) and sleep like a dead person. Also, I have been reporting exercise induced pain since 2012 with weakness in my limbs, upper back and breathing muscles yet no-one (neuro, Rheumy nor Rheumy prof) has proffered Fibro as a possibility - why is that? I've never been poked in my muscles to ascertain pain etc.

So many questions, sorry but fascinated to see your answers. hope you are well. Clare x

[Hopey in reply to Fennella02]

My rhuemy pressed on what they refer to as tender points if you are on the web you can find a diagram which shows you exactly where these points are also alot of my issues are skeeping where my body hips shoulders ached i had trouble sleeping and would be woken frequently by pain and to keep rolling from side to side and waking in the morning so fatigued it felt like i hadnt slept at all i am on lyrica 75mg morning and night which is a low dose but seems to help atleast I only wake on a good night no more than 2-3 times on a bad night no more than 4-5 times but better than 6 or more at times fibromylia so i have been informed causes pain but no damage to joints like other things like ra so thats a good thing just is going to make you life a pain in the butt it is more just learning how to manage you days and figure out how much you can do without feeling like youve been hit by a bus the following day i would suggest writting things down what is going on with you and taking this to your doctor and just telling them you need to know what could be causing this i find writting things down and giving the rhuemy a discriptive list helpful because telling her after listing 3 ir 4 things that are going on i feel as if i am winging i hope this helps i suppose in have a gp that is not dismissive this helps i have also been diagonised with conective tissue dusease but all blood result are normal so apparently that's under control atm so itseems fibro is my issue and to be honest i would have prefered to be diagonise with fibro alone because it from what i gather is not going to cause me major health issues like ctd probably will its just going to be a pain in the backside everytime i over do it but to be honest thats not going to stop me from doing anyrhing 😊

[Fennella02 in reply to Hopey]

Thank you Hopey. You sound very down to earth and determined. All I can add is that if this pain I now have is due to Fibro then I'll take the CTD as the pain is easier to live with!

Best wishes. Clare 😊

[TheAuthor]

I am so genuinely sorry to read of your struggle, and of your pain. I want to genuinely wish you all the best of luck with this. It may be beneficial to discuss this with your GP as they will need to run tests to exclude other illnesses to ascertain a Fibro diagnosis. I have pasted a link below for you to our mother site, FibroAction which hosts loads of useful Fibro information:

fibroaction.org

All my hopes and dreams for you

Ken

[Fennella02 in reply to TheAuthor]

Thank you Ken. I have already visited the website. What a very warm and supportive forum this is. Clare

[Shazzzy]

Hi Clare, it is very frustrating isn't it, i have found swimming and aquaerobics less taxing than walking. I cannot walk without pain and am quite slow. I have athritis and fibro. The water bears most of the weight so you exercise the joints and muscles with lot less strain. I still miss walking and hill climbing though. Good luck,

[Fennella02 in reply to Shazzzy]

Thank you Shazzy. I thought swimming would be a good one but I do hate it so . . . I am also very susceptible to and intolerant of the cold which adds to the unpleasantness of it all! However, if It becomes that I really can't walk much anymore then I shall have to get over it. Thanks so much for your advice and support. C x

[Shazzzy in reply to Fennella02]

I get cold too and often have a sauna when swimming it also soothes the muscles after working them.

[Hidden]

Oh please no one get upset here. Clare, you will want to go over

to Pain Concern with this question. johnsmith and a few others over

there will talk to you about this very thing. They do know a lot more than

I know and I was extremely physically fit. I still try to be but my back is holding

me down for now. It should get fixed in a week. Without the Pain Concern on

Health Unlocked, I'd be still Holding my muscles so tight on my thighs and bum

and legs that I would actually be cutting off the nutrients and good blood

supply when I walk and when I am resting besides when I walk. I am working

on relaxing those areas by their suggestions. Again, please don't get upset on

here. I know that Over on Pain Control of Health Unlocked, they have the

perfect helpers to guide her. XX Karen

[Fennella02 in reply to Hidden]

Hi Yikes. I shall certainly do so. My pain threshold is very high but is is not fun and I want to keep active. Thank you so much. C x

[lkm3s]

Hi Claire,

I would suggest a very good osteopath. I have been to a few that are not worth the money, but if you can find a good one you will know straight away. I go to London and pay a mint for mine when I am at my worst and he fixes everything that goes wrong with me and includes exercises to do at home which are very helpful. Good luck and don't give up!