pain management

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pain management

Postby Butterfly8588 » Wed Nov 04, 2015 8:37 pm

Hi guys,

I just wanted to share about my appointment today. As expected it was a complete waste of time. So apparently what I need to do is go to the gym/swimming 4 times a week, even if I can only manage 5 minutes! So I need to have a shower and wash my hair (which knackers me out), drag myself out of my house, drive to the pool, get changed, swim for a very short amount of time, get cold (which increases my pain) have to shower again, get changed and go home. Four times a week.

WHAT?! Are you serious?! I'm currently sat in front of you barely awake with filthy hair cos I have no energy to wash it and I need to exercise four times a week. The best of it is is that's a short term goal, apparently long term I should set myself a goal of swimming half a mile in open water next summer! Apparently my main problem is I've lost confidence in my body and doing this will greatly reduce my fibro symptoms.
I did point out to him at 1 time I forced myself to swim twice a week for several months and it never got easier and I had to go home to sleep for 2 hours after every session but he kind of brushed over that.

To be honest though I got off lightly, there was a poor bloke in front of me with a leg amputation who's wheelchair wouldn't fit through the door to the office and so they had his appointment out in the waiting room! A complete shambles.

So, my fellow fibro friends, our problem is we dont exercise enough and 4 times a week is what we should be doing. I'm sure exercise would help a little but I am in pain and absolutely knackered and it's all I can do to stay awake!

Gentle hugs xx
I'm the ghost of a girl that I want to be most, I'm the shell of a girl that I used to know well.
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Re: pain management

Postby Hellyn » Wed Nov 04, 2015 9:13 pm

Geeze, what pain management clinic was this??? sounds like boot camp.

Swim 4x's a only time I managed that was in Greece in the nice warm mineral sea, wonderful.

But seriously, exercise is good but not to that level, and did they mention pacing yourself? that didn't sound like it.

Like you and others, I wish they would spend a day with one of us, therapists, DWP, MP's, know it alls, and see what it's really like..then they would eat those words....

sorry you had such an upsetting time.

Hellyn :yikes:
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Re: pain management

Postby Sarah_89 » Wed Nov 04, 2015 9:26 pm

That's terrible advice, u need to pace yourself not push yourself! Obviously they have absolutely no idea what they're talking about! Reading this really angered me! And seeing someone in the waiting room, what happened to privacy??? The pain Dr I went to see couldn't give two watsits about me, I could tell by the look in his eye & just his overall persona, he wasn't listening to a word I was saying & just couldn't be bothered :(
I am a fibro fighter! :-)

Keep fighting guys and gals and stay strong! Gentle hugs

Sarah x
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Re: pain management

Postby Gaia » Wed Nov 04, 2015 9:52 pm

I have to agree with some of what they say. I have had fibro for almost 10 years. At times I have been so fatigued that I could hardly lift my head from the pillow. My pain levels have been so bad that I have had caudal epidurals, steroid injections in my shoulders and radio frequency nerve blocking, none of which helped my pain.

Five weeks ago I took up swimming and joined a twice weekly water aerobics class. It is specifically for people with mobility problems and is very gentle exercises in the water. Water takes the strain from both muscles and joints so it is very low impact. The first few weeks I could not complete the full hour because I was so exhausted, but my pain while in the water was almost non-existent.

I gradually pushed myself to do a few more minutes each time and I am now almost able to complete the full hour each time and I feel proud of myself for making a positive change to my life - which for the last 10 years has been one of utter exhaustion all the time, lots of bed rest, afternoon naps and huge amounts of pain and very little fun. It's been miserable!

Being in the water is so relaxing and it is making a real difference to my life, both physically and mentally. I feel better in myself than I have done for years. It does take me a long time to get showered, dressed and get back home, but it truly has helped my pain levels and I am gradually getting a little more supple. I need to spend the following day resting, but I think until you have tried something you shouldn't knock it.

When I was first diagnosed, the Rheumatist told me the worst thing I could do was to sit around. He said muscles become weak within 3 weeks of lack of exercise or movement and much of the fatigue will be the result of my body fighting to maintain it's muscle mass in order to avoid weakness. It's a self-fulfilling prophecy and I think he was spot on.

I have always tried to keep myself active up to a point and I often push myself harder than is comfortable, simply because I will not give in to the fatigue - but I SO wish I had taken up water exercise years ago! It really is helping me gain control of my body and get my life back, rather than my body controlling ME.
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Re: pain management

Postby JasmineJay » Thu Nov 05, 2015 10:09 am

It is not helpful to push ourselves so hard that we disintegrate into a flare! Learning what I am able to do and what is too much is a very long and difficult process. Water has always been helpful for me. Warm water.
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Re: pain management

Postby carolad » Fri Nov 06, 2015 10:37 pm

Gaia wrote:

When I was first diagnosed, the Rheumatist told me the worst thing I could do was to sit around. He said muscles become weak within 3 weeks of lack of exercise or movement and much of the fatigue will be the result of my body fighting to maintain it's muscle mass in order to avoid weakness. It's a self-fulfilling prophecy and I think he was spot on.


I think that's exactly right Gaia - the worst thing you can do is stop moving - your muscles will become weak and stiff...and that causes pain. And yes, when you lose fitness, you become weak and any exertion leaves you feeling more tired than ever.

If you do find exercise difficult, start with something very gentle. There will be SOMETHING you can manage, even if you can't do a lot to start with. Walking would be a good start - and if you can't manage a long walk, then do lots of short ones. I'm sure most people can manage a 5 minute do that, twice a day...and then build it up.

Don't forget to stretch those muscles too, that can also help with pain. Get advice from a Physio if you are unsure what to do.

Yes, pacing is important and you don't want to overdo it, but sometimes it is good to push ourselves slightly out of our comfort zone :-)
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Re: pain management

Postby SchroedingersCat » Sat Nov 07, 2015 11:40 am

Gaia and Carolad, I agree with you both. I've let my exercise levels slide over the last 2-3 years and my FM has definitely got worse. I'm giving up work for a while to work on DIY projects at home, and I plan to start running again. There is no pool anywhere near me unfortunately or I'd be going swimming too, now I will have some time to myself (instead of 2 hours commuting and 8 hours stuck in the office 5 days a week).
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