Fibromyalgia advice

ShelBell

PP I have Hughes too! Are you sure you aren't me in some parallel world?

Am waiting on an OT assessment, so will ask them about that thankyou I have to have a high protein diet due to previous surgery, this is the problem with having numerous syndromes, what's good for one is bad for another.

Mupette

mum-of-3 wrote: »

Have you tried gabapentin? The pain clinic prescribed it but it didn't do anything for me, yet a friend with fibro thinks its brilliant!

This would be my suggestion too, I'm on that for my M.S. but i am hearing more and more people are being put on it for fibro.

Penny-Pincher!!

ShelBell wrote: »

PP I have Hughes too! Are you sure you aren't me in some parallel world?

Am waiting on an OT assessment, so will ask them about that thankyou I have to have a high protein diet due to previous surgery, this is the problem with having numerous syndromes, what's good for one is bad for another.

This is very ODD ShelBell....I too had surgery 6 years ago which means I must have a high protein diet. Does your weightloss have anything to do with your high protein diet? PM me if you dont want to reply publicly.

Your OT should be able to advise on many things.

PP
xx

ShelBell

Yes lol, I had a gastric bypass 2 years ago (my story was in take a break a few weeks ago so it's no secret) and lost 10 stone (my sig is out of date). Best thing I ever did but I now have chronic malabsorption and have to eat a very high fat diet to stop losing weight.

Penny-Pincher!!

You have a PM Shelbell.

jc2703

Right - Listen up....and dont laugh!!

Cherry Juice.

I get it at Mr T's - It is called Cherrygood its with the fresh orange juice £1.35 a litre. 300ml on a morning - 300ml on a night (is what I'm drinking) - not only has it helped with my pain management it has lifted that 'foggy' feeling so I'm feeling 'sharper' than I have for years.

Try it for a week - what have you got to lose bar about £2.70?? please let me know how you get on.

Jo_King

Here, for what they're worth, are some of my non-medical tips (I'm not claiming they'll help anyone else - fms is a very personal thing):

1) Regular routine. I have my first GP to thank for this. I get up and go to bed at the same time every day. No exceptions. I work, so it's a 7.00 start (it takes me 2 hours to get up, washed and dressed) and a 9.30 bedtime. This has been really, really, really hard at times - sometimes I just don't want to get out of bed at all - I dread my early morning pain and fallings over - and if I only get to sleep at 4am, getting up at 7 is a killer. But it has changed how I sleep, and my energy levels during the day. I don't quite know how it works, but I think it means my body knows what to expect from me, and so behaves a little better (I tend to think of my body as a rebelling teenager!).

2) Exercise. I resisted this for years, but with the support of a wonderful physio I started very gentle exercise in water, working up to swimming. I've also started taichi. Yes it's hard, and it does usually hurt to move (I find the walk from the changing room to the pool harder than the swim itself), but very gradually I'm seeing my physical fitness improve. More importantly my sleeping has improved. It's not like I don't have bad patches, like I'm having at the moment, but it makes my body physically tired, which means it's more likely to drop off to sleep.

3) Shiatsu massage. It costs a fortune, but it makes a real difference to me. I was terrified in my first appointment - too many encounters with inexperienced physios - but have the good fortune of having found a therpist experienced in working with chronic pain. It makes all the difference.

4) A mini hot water bottle on your back, against your kidneys, when you're sitting down. No idea why it helps, but it does.

5) Pacing. I know, I know, it's what everyone talks about and everyone struggles with. I'm rubbish at it - I work, because I can't afford not to - and doing too much makes my pain levels rocket - but learning not to do too much on your better days can break the cycle, at least a little.

Anyway, these are just a couple of thoughts. They may not be right for you right now. I know I've made dozens of small adaptations - from the clothes I wear (no buttons if I can help it!), the car I drive, the food I eat, the knives and forks I use. I'm afraid I'm living off ready meals at the moment, which isn't healthy, but I can't work AND find the energy to cook healthy food.

ShelBell

Thanks I meant to get some cherry juice while in t's yesterday but fibro head me forgot! I was working up until June, when it all got too much. I was having problems with my employer and the stress sent everything loopy, and brought on ocular migraines which caused temporary blindness. I hope to go back to work some time next year. Being the sole carer for an 11month old for the past 4 months while hubbys worked away sun-fri hasn't helped either but that should be changing soon.

On the subject of husbands, has anyone's partner had support from carer organisations? Hubby never has but after a bad weekend I'm starting to think it might help. I had a bad weekend, head very foggy, lots of Hughes headaches, and bad pain levels, and he couldn't deal with it and got quite snappy, mainly because my brain fog was that bad I couldn't answer simple questions and he doesn't understand how someone can be like that. We talked it through today etc but I think I might see what's out there. Only problem is the one organisation I know of is my ex employer

Pp I did get your PM, haven't replied yet as I tend to use my iPhone more and typing takes forever.

formaldehyde_perfume

jc2703 wrote: »

Right - Listen up....and dont laugh!!

Cherry Juice.

I get it at Mr T's - It is called Cherrygood its with the fresh orange juice £1.35 a litre. 300ml on a morning - 300ml on a night (is what I'm drinking) - not only has it helped with my pain management it has lifted that 'foggy' feeling so I'm feeling 'sharper' than I have for years.

Try it for a week - what have you got to lose bar about £2.70?? please let me know how you get on.

Thanks. As you say, it's worth a try and certainly won't hurt. It's now on my tesco shopping list so I will keep you updated

jc2703

formaldehyde_perfume wrote: »

Thanks. As you say, it's worth a try and certainly won't hurt. It's now on my tesco shopping list so I will keep you updated

Please do - really hope it works! I ran out at the weekend and my pain has rocketed! MUST get some more tomorrow