Newly dx with Fibro

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Newly dx with Fibro

Postby E-Bunny » Mon Jun 17, 2013 10:48 am

Hi Guys,

I am recently diagnosed as having Fibromyalgia. Fore just over a year now, I have gone to bed every night only to feel more tired in the mornings than when i went to bed ! I have to constantly stretch my legs and arms just to try and get some relief from the stiffness and aches !

I have tried more excercise ie : walking the dog for longer distances but this only seems to make things worse !

I have a constant dull ache in my legs, arms and back, which sometimes developes into a throbbing pain. In february tho the pain became so intense I could not have anything touching me, even clothes touching my skin felt like knives stabbing me =( This lasted for a couple of days... Saw my GP and was advised to do shock excersizes to desensitise my muscles and the pain would subside o.O

At the end of May, this happened again, I went to A&E as the pain was unbearable.. All blood tests came back clear and they dx me whith shingles lol even tho this had happened in feb also and no rash has ever been present !

Any way after 12 hours in A&E I went straight to my GP again so they could see how much pain i am in ! It was a locum GP who after poking me with his finger in several areas of my back instantly dx me with Fibro. If it had been my normal GP I would have been told to do shock excercises again o.O

I have been given Lyrica 100mg twice per day, at first it made me high as a kite... But now nothing, and all the pain has returned =( I have not been referred to a Rhumotologist ( is this normal ) so resorted to taking over the counter co-codamol and diclofenic acid, although still no relief !

Does anybody else suffer from those few days of severe sensitvity to touch ? To the point even clothes touching the skin, and having to stand all the time as anything touching ie back of a chair, or even a matress no matter how soft causes intense pain =(

Sorry for the long post... I am new to this and looking for guidance, help into where i go from here.. who i need to see as the pain, day to day is hard to live with.. My GP is useless, and will probably just recommend the excersizes again which made it worse 1st time round, so not doing them again ! Please any help and guidence will be greatfully recieved =)

Tina x
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Re: Newly dx with Fibro

Postby painprincess1 » Mon Jun 17, 2013 10:59 am

welcome to the site hunnie, and yes i get very sore skin like its being burned off or even a light touch feels like a punch.most of us here get pain everyday. tiredness seems to be a fibro fave. u need to go see your dr or find one who understand what u have, there are alot of pills that can help make your life for sleep we tend not to go in the 4 stage of sleep that why we are always so tired even after being in bed for 12 hours.i find mussle relacsents make me sleep better so im not so tired . and they help with the spasms . its a long road to find what works for u but pls dont give up and spend the rest of your life laying in bed u dont need to .xxxxxxxxxxxx :-D
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Re: Newly dx with Fibro

Postby whoami » Mon Jun 17, 2013 11:17 am

Tina......I am sorry to hear of all your pain. However, I am also sorry to say your pain is quite common for the fibro
family. "Shingles", now that must have been a hard one to swallow. I also thought you had a rash with shingles.

The Dr. that did a quick prod and diagnosed you with fibro obviously knew what to look for. Yourfirst GP is right about excersise. We need to start with light excersise, light but not the normal thing we do. Slowly increase but push yourself as far as you can. It will hurt at first but your body with time will adjust. Just remember slowly at first but try to push yourself.
Go back to the Dr who prescribed you Lyrica, a lot of people take it, I don't. Explain how it is not helping anymore. The type and amount of medication we need can change quite often and it takes a while to find the right mix for you. We are all different, our pain is different so we may not all take the same. You could ask to be referred to a pain clinic, I learned so much from them and also a rhuematologist.

Tina, I realize how hard it is to take in all the info you will be given by people and Dr's. Some of the things suggested will sound crazy but will help. I have had fibro 24 years and still get frustrated at times. What I find helps is to try to be positive, try to find something positive when times are bad. Work together with your Dr's and have lots of patience. Some Dr's don't know much about or how to treat fibro, they must also be frustrated at times.

Tina, keep coming here, there are lots of people, loving, caring and understanding people who can hold your hand along this journey. I hope you find some peace.

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Re: Newly dx with Fibro

Postby FluppyPuffy » Mon Jun 17, 2013 11:33 am

Being sensitive to a myriad of things is an often~associated problem with FM, from noises/sounds thru to meds and touch. At times I can't stand having the bedding touch my skin, esp if there is even the slightest bit of roughness and/or bobbling on it. It's the same with clothing and socks and things, the slightest bit of roughness and I can't wear it at all.

For the burning/itchy~type sensation, I've found that moisturising my skin everyday can help ease it off a little, and when it tries to go up a few levels, I'll do it at least twice a day using a lotion that helps cool things down a little more than my usual body butter. And if that doesn't help, I use aloe vera gel until starts to ease off.

And as painprincess has said, even the gentlest of touches can feel like we have been punched at times, all thanks to how this condition screws up the way our body interprets the numerous signals that whizz round it :facepalm: :facepalm: :facepalm: :facepalm:
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Re: Newly dx with Fibro

Postby mililly » Mon Jun 17, 2013 11:33 am

I must be lucky as i started with severe pain in february and have been to see rheumatologist once and i am back on wednesday for the dx which they have already suspected was fibro. I have had various meds from vo codamol tramadol and now mst eith paracetamol and oromorph. Dont be fobbed off go back see a different doctor ask to be referred. Im still suffering and am just trying to get the right combination of meds.
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Re: Newly dx with Fibro

Postby E-Bunny » Mon Jun 17, 2013 1:08 pm

Hi, And thanks for the replies !

I am walking the dog alot further and trying to increase the distance that i go.. But I was also diagnosed with right temporal lobe epilepsy last July which is still uncontrolled and unpredictable at the moment so I have to be very carefull when out alone =(

Another question... I have noticed my weight is dropping quite quickly.. I havent changed my diet, and it's only been the last 3/4 days that i have started walking the dog further ! Is weight loss a side affect of the Lyrica ? Although i am not complining I could do with losing a few stone lol.

Unfortunatley i cannot see the doc that prescribed me the Lyrica as he was just a locum covering for my GP, and she is the only gp in the surgary. I am going to get an appointment with her and ask for a referral to a rheumatologist or pain clinic as i cannot go on like this =S

Tina x
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Re: Newly dx with Fibro

Postby MichelleJ » Mon Jun 17, 2013 8:48 pm

Weight issues can be side effects with meds. Check the leaflet to be sure but I know I put weight on with it. The pain clinic advise you only ever do 80% of what your maximum is. And that should be max on a bad day not a good day as u need to manage the activity even when having a bad day. Then u slowly increase but only ever at 80%. Google pacing fibromyalgia it will explaining. I find I can build ok like this but then I relapse and have to start from the beginning again as I can no longer achieve it. Get referred to the pain clinic if u can. Lots do courses on pain management, which I found good, also they can sort your meds and often offer acupuncture for u to try. It's free on nhs. I'd be a lot worse without them as they have really got my treatment working for me. Even so, I'm still housebound a lot of the time and need a wheelchair so would hate to think how I'd be without what they do lol
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