Newly Diagnosed and looking for tips

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Newly Diagnosed and looking for tips

Postby GQM » Wed Jan 14, 2015 3:01 am

Hi to everyone and Happy New year to you all.

I was diagnosed with fm in September last year and was assessed for a pain management course at the Walton Centre. Unfortunately I was not accepted because wave dislocated my shoulder. The thing that really catches me out is all of my fingers and toes most days feel like someone is trying to pull my nails off with a pair of please.
Any answers would be great

Thanks

G
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Re: Newly Diagnosed and looking for tips

Postby chell1973 » Wed Jan 14, 2015 3:57 am

Hi I was diagnosed in November on pregabalin been on 2 mri scans shoulder and elbow pain got told 2 bones in neck have fused together and not much help from doctor ...cheshire
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Re: Newly Diagnosed and looking for tips

Postby MissGems73 » Wed Jan 14, 2015 4:46 am

i was diagnosed in september as well because i was going to my doctor with different things almost weekly she said that she thought i was fibro referred and me to rheumatologist who confirmed i do have fibro, rheumatologist is about as helpful as a feather in the wind, but my doctor is great, she talked about keeping a food diary as different foods can be a trigger for different pains and aches and sleeplessness. I have figured out that red peppers tomatoes different sauces with a lot of food colourings in them and caffeine trigger the pain and swelling in my hands and fingers, i do still get bad days with them but not as bad as they was before i started cutting those things out, i keep a wheat bag in the fridge so when my hands and fingers swell and burn i use that to help cool them down . my mum had some pressure gloves (not sure of the proper name for them) from the occupational therapists and i tried them one day when i could hardly move my fingers and they did ok to help with the swelling but nothing to help the pain.

Im still going thru foods to see what triggers and what helps its taking a long time and im getting really bad headaches with somethings im cutting out but if it works its gotta be worth it.
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Re: Newly Diagnosed and looking for tips

Postby Brian » Wed Jan 14, 2015 8:54 am

Just prepare for hell and anything above that is a good day,apart from all the meds you'll be on one of the best is to rest as much as possible if you push yourself it only comes back with devastating pain and fatigue
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Re: Newly Diagnosed and looking for tips

Postby jacson » Wed Jan 14, 2015 9:17 am

Hello there, I was diagnosed 2 years ago and have found that I have to listen to my body when it tells me to rest I rest for a while then start again, don't push yourself to the limit or you will be paying for days, set small goals for yourself daily but it doesn't matter if you don't reach them, cannot walk very far these days but I do go to the swimming pool when I am able and do gently stretching exercises, I find that the water helps with having less of an impact on my muscles, I then finish off with about ten minutes in the sauna, this relaxes my muscles. Do drink plenty of water throughout the day to keep your muscles hydrated, I drink at least three pints during the day and have a large glass before bedtime. I also bought a back and neck electric heated pad which helps with bad muscle spasms, it's very soothing too.
I hope some of these tips help you, and good luck.
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Re: Newly Diagnosed and looking for tips

Postby blessedmummy » Wed Jan 14, 2015 11:21 am

Hi there, I am newly diagnosed too back in August lastyear! Not sure of your circumstances, for me though,
Im a mum of 2 and always worked fulltime up until last year, I had to stop due to the pain, I was crying in work with it n everything.
So I tried part time and eventually stopped as I just couldnt do it. Ive spent lots of time reading up on this very complex illness.
So I take my tablets and just do what I can each day, if I cant houver I dont, etc.
I try n do at least a couple of things each day to keep myself positive, then I can say I done it.
Swimming definately helps me, well its more kind of floating I do really lol. But it takes the weight off.
And the sauna and steam are good too. Also just getting fresh air, even if I can only walk to the front door!!!
Dont know if you know God or not but I find praying gives me great peace and I dont worry so much.
My biggest tip would be not to overdo it on a good day as you will pay for it the next day.
I had a great day on tuesday and today I havent even got the kids to school, we also have snow n I wouldnt have fast
Enough reactions in driving!

I wish you well and stay connected on these sites and Fbook too, it helps to hear from others.

Love and soft hugs x x x
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Re: Newly Diagnosed and looking for tips

Postby GQM » Wed Jan 14, 2015 11:56 am

Thank you for your replies.
I had a series of injuries that started this all off,I had damaged my knee and was on crutches June 2013 then I slipped from my crutches and crushed my head against my shoulder which obviously caused me a great deal of additional pain and eventually found I had 3 prolapsed discs. After a few visits to A&E I collapsed and was admitted to hospital 52 days later I was released having had my knee operated on and then a series of injections in my neck. The pain around my body hands feet the complete trapezium area neck shoulders and back and my head and face.
I have been unable to work so my wife has had bare the weight of all of our bills.
I struggle to do much in any day and yes I have really bad days and just bad days which is causing me to struggle with everything. The buttons on my jeans are a real struggle and tieing my shoe laces, intricate things have become really difficult.
Medication. .......paracetamol, tramadol, pregablin and amitryptelene.
I am also at a hyperbaric chamber every morning which has given me a little more energy.
I was going to start pilates but I fell and cracked a couple of ribs and dislocated my shoulder so I am a bit battered to say the least.
Again thanks for your help
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Re: Newly Diagnosed and looking for tips

Postby FluppyPuffy » Wed Jan 14, 2015 2:31 pm

:welcome: to our little FibroFamily GQM :cow-wave: :cow-wave: :cow-wave:

There is lots of info and advice across the boards, so hopefully you'll find some suggestions to try out or look into whether they may be helpful to you. It might be worth starting off by having a bit of a looky and a read at what is on the Help/Tips On Coping board as it has details of things that others have found helps them. And of course you can always ask about things. Do bear in mind tho, with FM what makes a difference to one may not do so for another, so it may takea little while to find what makes the difference to you.

What you have described with your fingers and toes is something experienced by a number of us, so you're not alone with it :cow-wave: :cow-wave: :cow-wave:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: Newly Diagnosed and looking for tips

Postby Pye266 » Wed Jan 14, 2015 5:21 pm

1st get a medication that suits you sorted.

2nd, Never let you mood drop.

3rd, Go to the pool do some light exercise, No matter how sore or tired you are force yourself, Trust me it works.

4th - Having a really bad day, and i mean bad, Don't feel guilty to lie and rest, stay in your PJ's no matter what others say.

5th. Doubters, Don't listen to them, Blatantly ignore them. They don't have it so they will never understand. Also don't mention it, Just make's them look at you as a bluffer.

6th - get to know other suffers online and in your community, Hang out to chat, Try do normal things. This will keep you sane.

Most of all be mentally strong, force yourself , Try keep muscles active even when sore. And important, Keep mood high, Watch things that make you laugh. Works wonders for me.
TRYING TO COPE IS A JOB ON IT'S OWN, UNLESS YOU SUFFER IT NO ONE WILL UNDERSTAND!
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Re: Newly Diagnosed and looking for tips

Postby Brian » Wed Jan 14, 2015 5:43 pm

Pye266 wrote:1st get a medication that suits you sorted.

2nd, Never let you mood drop.

3rd, Go to the pool do some light exercise, No matter how sore or tired you are force yourself, Trust me it works.

4th - Having a really bad day, and i mean bad, Don't feel guilty to lie and rest, stay in your PJ's no matter what others say.

5th. Doubters, Don't listen to them, Blatantly ignore them. They don't have it so they will never understand. Also don't mention it, Just make's them look at you as a bluffer.

6th - get to know other suffers online and in your community, Hang out to chat, Try do normal things. This will keep you sane.

Most of all be mentally strong, force yourself , Try keep muscles active even when sore. And important, Keep mood high, Watch things that make you laugh. Works wonders for me.

Everybody is entitled to their opinion but I have to disagree with a couple of points
2nd how can you possibly never let your mood drop when your in excruciating pain even the strongest minded person gets down
3rd force yourself to do light exercise no matter how sore or tired you are,so your telling me when your in excruciating pain and severe fatigue the best thing to do is do more exercise even though you probably don't have the ability to put your own clothes on

There is no way in my opinion this is possible if you truly have fibromyalgia this isn't possiable
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Re: Newly Diagnosed and looking for tips

Postby GQM » Wed Jan 14, 2015 6:41 pm

Thanks for your responses.
I understand everybody's opinions as I feel all of these pains and emotions.
as a man it is difficult to find anyone who will admit they have this condition, however I am starting to find that some people who I have known for a long time they have this or chronic pain.
Yesterday I found out that a friends mother had this for around twenty years. I will make a point of speaking to her soon.
One of the things that happens to me is a thing I call "weightlessness" the feeling back as a child when you get to the top of a swing when you are just about to come back down. This happens whether I am lying in bed, sitting or walking. It wakes me up suddenly.

Thank you so much for showing that we all need to express our own way of coping and maybe that way will help others.
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Re: Newly Diagnosed and looking for tips

Postby dazzleship » Wed Jan 14, 2015 10:58 pm

hi GQM, welcome to here :-)

you have been given lots of good advice already so all I will say is this. make sure you pace yourself; it's easy to overdo things especially on good days. you will find if you don't take it easy that you may feel a lot worse the following day.

recognise when you are starting to feel bad and take a day out to rest to stop it getting worse. it's something I do and it means that I generally only need one day or two days at the most, off work, instead of being off for longer when I have a flare up.

also bear in mind that although you may find medication that works for you, for some of us medication doesn't work. if you are one of us :-) there are alternatives - TENS machine, massage, etc.

and yes, keeping a positive attitude is very important, I think. of course pain gets a person down, but I spent a lot of time last year being very down and feeling sorry for myself and I have made a point lately to have a more positive attitude. it doesn't make the pain any less but it helps me get through it better. :-)

good luck
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Re: Newly Diagnosed and looking for tips

Postby carolad » Wed Jan 14, 2015 11:05 pm

Pye266 wrote:1st get a medication that suits you sorted.

2nd, Never let you mood drop.

3rd, Go to the pool do some light exercise, No matter how sore or tired you are force yourself, Trust me it works.

4th - Having a really bad day, and i mean bad, Don't feel guilty to lie and rest, stay in your PJ's no matter what others say.

5th. Doubters, Don't listen to them, Blatantly ignore them. They don't have it so they will never understand. Also don't mention it, Just make's them look at you as a bluffer.

6th - get to know other suffers online and in your community, Hang out to chat, Try do normal things. This will keep you sane.

Most of all be mentally strong, force yourself , Try keep muscles active even when sore. And important, Keep mood high, Watch things that make you laugh. Works wonders for me.


Good advice :)
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