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Fibromyalgia Action UK

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JoJolou69 profile image
31 Replies

Hello everyone, I've just joined tonight and I'm finding it nice to see I'm not alone suffering with this condition. I've only just being diagnosed, yet I've been going to the doctors for a few years now.

Any advice on dealing with this daily pain would be very much appreciated.

Thank you Joanne.

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JoJolou69 profile image
JoJolou69
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31 Replies
vixen49 profile image
vixen49

Hi Joanne my name is. Ros just take things easier and don't over do it hunni you'll get good days as bad days. I was diagnosed I fibro nearly a year ago it took me quite a while to get use to pain

JoJolou69 profile image
JoJolou69 in reply to vixen49

Thank you Ross. X

TheAuthor profile image
TheAuthor

Hi JoJolou69

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I genuinely hope that you find the site as useful and as fun as I do?

I have pasted you a link to our mother site, FibroAction, and it is full of useful Fibro tips from medications, Fibro groups and much more:

fibroaction.org

My Physiotherapist always tells me to pace myself and not overdo things, and do my best at getting my exercises done without too much straining and paining!

I sincerely look forward to seeing you around the forum.

All my hopes and dreams for you

Ken x

JoJolou69 profile image
JoJolou69 in reply to TheAuthor

Thank you very much Ken. X

Fibrofoggiest profile image
Fibrofoggiest

Hello and welcome our lovely forum :-)

I think it definitely the best, most informed and supportive place I've found, together with being the friendliest by miles.

Has your GP put you on any medications at all yet? If not, it might be an idea to ask for a referral to a pain management team at your local hospital and possible even to a rheumatologist. As Ken says, pacing is one of the very important things you can do to help yourself get through the days. Treat yourself gently and don't expect too much of yourself :-)

I applaud you for reaching out for the help you need, and I am sure many more people will add to this post come the morning, but I am sending you lots of positive healing vibes and very much look forward to seeing you around the forum :-)

Foggy x

JoJolou69 profile image
JoJolou69 in reply to Fibrofoggiest

Thank you Foggy. No I'm not on any medication as my doctor said it's addictive. But I will go back and ask to see someone about the pain. X

Ginsing profile image
Ginsing

Hello Morning and Welcome to our site I see the reliable Ken has popped i to say i so I am sure he has covered some of the welcome info.

Yes he has but I would also suggestloking at

healthunlocked.com this is our host site and offers a wealth of information .

Hope you enjoy your time with us we are a grand lot of fellows. Do pop in to the morning Chat we would love to see you.

xgins

JoJolou69 profile image
JoJolou69 in reply to Ginsing

Thank you Gins x

Hi Joanne

Welcome to the site. The people here are very friendly and helpful. I was diagnosed with this horrible condition as well as other conditions about 18 years ago. I only found this site about a year ago and it has been marvellous. You take care janet. Xx

JoJolou69 profile image
JoJolou69 in reply to

Thank you Janet. I'm glad I've found this site. X

Morning joanne, Lovely to meet you. I see that the others have given you a good welcome.

so ill just say hi for now and I hope to see you around.

Hugs sue xx

JoJolou69 profile image
JoJolou69 in reply to

Thank you Sue. Lovely to meet you too. X

Fantastic profile image
Fantastic

Hi Joanne I have only been officially diagnosed this February too. I am finding it very difficult to accept and adjust to the diagnosis. I was hoping I had a more tangible easily treated orthopeadic problem not a chronic pain condition that is so misunderstood. I have twice now filled in my Blue Badge form but not actually sent it off. This is because I feel such a fraud on good days and don't want backlash off ignorant members of public, yet on bad days I can barely put one foot in front of the other. On very bad days I don't leave the house. In winter this can be weeks on end. I know this winter I will probably have to bite the bullet and apply for the badge. I suggest to you to read as you as you can about the condition it will help . I am still learning .

JoJolou69 profile image
JoJolou69 in reply to Fantastic

Thank you very much. I will read as much as I can, it's tricky taking it all in at the moment as you're aware.

I'd bite the bullet and apply for you badge. Although I wasn't aware this condition allowed us to get a blue badge. X

in reply to Fantastic

Hi Fantastic dont wait until winter to send off for your blue badge you are not a fraud we all get good days but this is there for when we get bad ones too. I dont know about you but sometimes the bad ones outweigh the good. As for ignorant members of the public there are plenty of times when someone without a badge parks in disabled spots and dont think anything of it. They are the ignorant fraudulent ones. I too only got diagnosed with fibro in March and am struggling to come to terms with it and sero neg RD. There is so much to learn but I have found this site invaluable. Gentle hugs Joolz.x

Fantastic profile image
Fantastic in reply to

Thanks Flossyjoolz part of me doesn't want to accept I am ill . It's a tough mental battle . In winter I have flare ups for weeks on end interspersed with only a couple of good days and then I have another flare up . I wouldn't wish this illness on anyone . The pain has been that bad I wish I didn't have my leg anymore at times. It went dark at 9 pm tonight and the advertisement for the next series of XFactor means winter is imminent . Oh the joys of Fibro X

in reply to Fantastic

I feel the same. Its hard to come to terms with it. I dont want to be seen as disabled but I was encouraged by a friend to apply for the blue badge as I struggle so much with walking and I was getting to the point I didnt go out at all. I still have days when I just want to stay home because of this damn fibro but when we do go out at least we can park closer to things and not have to walk so far. I also registered disabled with Social services and they put grab bars in my bathroom and at the step to my front door which helps.Take care. Gentle hugs Joolz.x

Morning joanne love welcome to this lovely caring group I have had it for twelve years and im just starting to accept it big hugsssxxx

JoJolou69 profile image
JoJolou69 in reply to

Hello, it's hard to accept because I've always gone full pelt at everything and am struggling to accept that I can't do as much as I used to. X

in reply to JoJolou69

I know it is love but when you accept it it better to deal with I have to have my partner do alsorts for me I hated it but now I know I cant do them myself love big hugsssxxx

JoJolou69 profile image
JoJolou69

Good morning everyone and thank you all for such a lovely friendly welcome.

My doctor hasn't put me on medication as she said it can be addictive. I understand this, but that doesn't help my pain. She also told me to try yoga, which I haven't yet as my latest flair up is very bad. She said to do meditation to help me de stress. That's all very good, but I find it hard to relax and switch my brain into meditation when the pain over powers the relaxing.

So at the moment my doctor is trying the more natural approach with me I think.

tracypom profile image
tracypom in reply to JoJolou69

That's not good, can't you see another doctor who willing to help with medication for the pain, my walking and balance is terrible at times, I could not manage yoga or concentrate for enough time to meditate. Sending gentle hugs

JoJolou69 profile image
JoJolou69 in reply to tracypom

Hi, my walking and balance are terrible too. I feel because I've only just being diagnosed i have to give it a try. I've been to the doctors weekly for the last month for help with the pain, yet still nothing. I think I'll have to see another doctor. Thank you for your help.

Chirnie profile image
Chirnie

Hi Hun

Hope u r feeling well today . I've had fibro for a couple of years and the best balance if drugs I have found is pregablin tramadol and sertraline along with naproxen as well . Not everyone is suited to the same drug . So it may take a while . However the pain is always there along with extreme tiredness. But u don't learn to cope and some days u can have good days as well just stay as positive as u can . Hugs Michelle

JoJolou69 profile image
JoJolou69

Thank you Michelle, I think I'll go and see another doctor. Although this is the only one that has diagnosed me. My other doctor said it was sleep apnea and sent me for many tests. To which they came back with no sleep apnea yet restless legs. I've since realised the restless legs is part of the fibromyalgia. He just wanted to sedate me at bedtime. So I went to see someone else. It's very frustrating, but lovely to get nice support on here from people going through the same. Thank you.

mitziblue profile image
mitziblue

Hi Sweetheart, welcome to our site!!! So sorry for your diagnose. You have to learn you now have limits and when we over do it as we do often because we never know when we will get another good day. I took the pain as long as I could, probably longer than I should have and finally had to go to a pain clinic. Yes the meds are addictive but it's not as if we are going to get better. It only get's worse with more and more symptoms. Hang in there honey and if I can help answer any of your question please just ask. Hope this helps you and you find some relief from your suffering!!! xxx Mitzi

JoJolou69 profile image
JoJolou69 in reply to mitziblue

Thank you Mitzi x

phlebo123 profile image
phlebo123

Hi and welcome!

I was diagnosed 8 years ago but thinking back I had symptoms for many years before.

The hardest thing to do is to accept the condition and learning to accept that you can no longer live your life at 100 miles an hour, which now becomes 100 mm an hour!!!

The 4 tips which I would suggest are:

1) Pace yourself...... Don't try to tackle lots of activities at the same time, just one at a time. My motto is "little and often"... that applies to shopping, washing, ironing, cleaning... when I start to feel tired I take a break.

2) Make plans in advance.... to help pace yourself, plan what you are going to do each day, to include a variety of activities, with some relaxation. Spread out tasks evenly, so your not tempted to do too much.

3) Be patient with yourself.... by pacing and planning your days, you should soon feel better... but don't be tempted to rush into lots of things or you will overdo it and have a set back ( or flare up in fibromyalgia terms). Be patient and take things one step at a time.

4) Learn to relax.... add some relaxation in to your daily plan... read a book, a short walk, yoga whatever you enjoy. Relaxation is important because it helps to soften tense muscles as well as calm a busy mind.

I know this is a lot to take on board, so soon after your diagnosis, but it has taken me years to get to the stage where I can manage my symptoms by pacing myself.

If your family and friends expect too much from you then you have to learn to tell them that you can't always do everything that they can... if they have difficulty understanding then ask them to read the Spoon Theory ( butyoudontlooksick.com )... which is a great way of explaining what a day in "our life" is like.

Hope this has been of some help to you and remember we all know exactly what you are going through, so take care xx

JoJolou69 profile image
JoJolou69 in reply to phlebo123

Thank you very much, great advice. x

lilian68 profile image
lilian68

hi jojolou69

welcome to the site you need to see a different doctor to get some pain meds not every gp seems to understand the amount of pain we are in i am fortunate to have a very good .gp.xx

JoJolou69 profile image
JoJolou69 in reply to lilian68

Hi lilian68

I will go and see a different one next week. Thank you x

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