...The saga continues - recent GP visit.

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Re: ...The saga continues - recent GP visit.

Postby Flash » Fri Jan 11, 2013 11:35 am

ISM, good to know things are moving forward for you. Believe me, that appointment is quick for NHS. I saw a doc in Octtober about things getting worse, I'm still waiting to see someone after my appointment was cancelled by them as the consultant wasn't working that day.
The next time I was stranded by floods, don't they give us a bad time if it's us that cancel? Sorry, should I have swam the 24 miles there?

As for the constant pain, I think it depends on whaat else we have as FM tends to aggrivate other conditions and vise versa. I have OA and RA aswell, which is why the pain is more or less all the time.

A friend of mine has been DXed with FM and she has no other pain causing condition although she has underlying illness that is exagerated as the FM has worsened. She, like most of us, has near constant exhaustion. But her pain moves around and depends on what she does but at times she can dash about like a hare.

I hope it goes well at the pain clinic and good luck with ATOS. Hugs. X
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Re: ...The saga continues - recent GP visit.

Postby Iceskatemum » Fri Jan 11, 2013 2:12 pm

Thanks Flash, Sorry to hear about your difficulties I hope the floods didn't impact you directly. It must be awful for folk who have had to deal with all that upset & mess.
May be you'll be able to get your appointment sorted soon, have you tried phoning the consultants secretary or outpatients Department to see if there are any cancellations, I've done that in the past and if you tell them you will go to any appointment they tend to fit you in rather than see a space go to waste.
Will let you all know how I get on :lol:
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Re: ...The saga continues - recent GP visit.

Postby Flash » Fri Jan 11, 2013 4:50 pm

I have an appointment for February. Taking a cancelation would be good but I have to plan a lift with good notice. It's that or taxi, train and bus there, then same back in reverse.

Only my garden got flooded but the town gets cut off in all directions. The railways got wrecked too so the hospital couldn't have expected many to get in during those wet times anyway.

New route forward for you, I hope all goes well. Take care. X
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Re: ...The saga continues - recent GP visit.

Postby tonydin » Fri Jan 11, 2013 10:20 pm

hi agian ice glad your feeling more positve ,, constant pain in all 4 quadrents of the body is a is a constant for a fm dx so i think the doc was a little of the mark .. one thing that worrys me in your case is that like a lot of others you could be on a quest to rid your self of your pain by one treatment or another ie a cure , i belive and i will prob be corrected here by some one who has been cured , that that is an unatianable goal at the present time the pain will always be there and sometimes it will be bad , but there is nothing that can make us pain free , the focus of a pain clinic will be on how to live with the pain and how to carry on as noermal as you can with the pain in the background , not to eradicat it completly , my gp said meds can only take the edge of not take it away
but they can affect the way you percive the pain and how you cope
he was right in my case i, stronger and fitter at 60 than i was at 50 , and im lifting heavy weights better than i did at 40 but im in more pain than ever, if i let it affct my mind like i used to then i would be curled up on the sofa moaning and doing nothing, at least now im doing everything ( apparently my son wants me to go paragliding when we visit in swissaland at easter) hes got to be joking but you never know.
if you keep looking for a pain free life im afriad your going to be dissapionted , if you want a good life in pain then thats achevable with some good meds and a bit of hard work and determination
i belive your on butrans and lyrica , these were the turning piont for me , even though they did nought for the pain they did wonders for the way i existed with it
any thing you need to ask please do
tony
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Re: ...The saga continues - recent GP visit.

Postby jazzbabe » Sat Jan 12, 2013 12:12 am

Glad you're getting somewhere, being believed is the main battle. I've been lucky with my GPs. I have Gabapentin and Tramadol but try to keep to minimum dose as the tramadol is addictive. Feeling sick is one of the main side affects but you may also get constipated, it's one of the joys they don't tell you about! They knock me out but I am very sensitive to drugs. If you have a big dose and then cut down you may get a horrible headache too. Sorry to give you bad news but forwarned is forearmed and all that! Hope you get on well with the pain clinic. Take care.
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Re: ...The saga continues - recent GP visit.

Postby Iceskatemum » Sat Jan 12, 2013 7:08 am

Hi Tony , thanks for the post .....hope you do the paragliding ..if only to show the rest of us there's life in the old dog yet!

Just to clarify I'm not looking for a cure from FM or for that matter my back pain but I am looking for the best available treatment that will take the pain to a level that I can get on with my life. ( maybe I am already at that level and just need to realise it but hope there may be something else or the GP would not have refered me to the pain clinic).

I thought I had this sussed over the summer ,then my epidural & butrans patch & a short trip to the sun was keeping the pain in my back at bay and the mixture of daily meds was allowing me to tolerate the FM pain better although other symptoms of FM did seem to increase . However as the winter progresses my pain levels seem to have increased tenfold as have all the other FM symptoms. I am not doing half of what I was able to in August and as you say lack of doing something can just make matters worse.

Just to show I am not totally relying on drugs I have tracked down & gone on a short course (2 mornings) from a local Arthritis charity and have now been asked to go on thier longer 6 week course both of which are to teach various techniques to manage and get on top of chronic pain. Following the first 6hr course I have been practicing breathing techniques and mindfullness, again to help me listen more to my body & what it needs.
I try and go at least once a week to the local gym to use the steam room /sauna & swimming pool , where I walk for a couple of lengths to try & keep my leg and back muscles strength . I have to be careful & pace my exercise as chronic fatigue is the worst of my symptoms .I'm also going to a councellor to help me change my outlook on this illness & my "new" life, as I believe I am still grieving for the old me.

As I 've said before I am really glad that you are still able to achieve so much and with such a positive outlook but this is a really sneaky illness & can effect each of us in a different way. I have had many years of ill health and the dx of FM is just the latest in a long line of health issues . If I think of dx as the start line of ill health I am way behind given the many years my body has had to cope with other things, however I am hoping that I can still catch up and learn to live with this horrid illness and get into a new stage in my life .

Hopefully I will also be in a position to say I'm stonger & fitter in ten years time than I am now.

Take care ISM
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Re: ...The saga continues - recent GP visit.

Postby tonydin » Sat Jan 12, 2013 11:11 am

ice think your doing really well and heading in the right direction
well done
tony
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Re: ...The saga continues - recent GP visit.

Postby Flash » Sat Jan 12, 2013 11:46 am

ISM, you're right, F/M does effect us all in different ways as do other illnesses and conditions and to an extent, how we cope and persieve the pain can also have a possitive or negative effect on us. It is great to see others getting on with it and as we are alike in some ways, you and I would like to think we can do the same.

We don't have to remind each other of our previous lives, we have both been very active and overcome a lot over the years. I have had back problems since birth and had arthritis at a very young age yet still went on to do building and renovation, farming kitchen work, stable work and had some pretty active hobbies, not to mention, motherhood. I suffered pain through out but like you, persaveared.

But, there comes a time when, like you said, the exhaustion takes over. We suffer burn out and our past accomplishments are just that, in the psat. We, like a lot of long term sufferers, have come to a stand still and now have to find new ways to move forward and cope with the pain. I think most of us realise that we will never be free of pain, because we are realists.

Once we find our way through this again I suspect we will both be getting back up on the bike and heading on for another round of what life has in store for us. You have a possitive attitude and will manage well.

Take care.
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