Newbie but oldie !!

[Sharon1968xx]

Hi I'm new here I've suffered fibro for 21 years now I'm desperate for any advice that would be great this is the first time I've really spoke to anyone except doctors etc x

[glochessum]

Hi Sharon welcome to the forum. It's a great place for help and information, I have learnt loads about our condition since I joined. Just wish they could come up with a pill or something to make it all go away. Short of a labotomy seems just like we have to suck it up.

I hope you find it as informative as I do. X

[Hopey]

I have only being diagonise with fms and ctd ( possibly mctd/sle) nearly 2 years working as a medical receptionist i hear so many people define themselves as what their disease is i suppose my one piece of advice would be dont let fibro define who you are keep your distintive idenity i know i am only a newbee to this but i refuse to let it get the better of me i figure i am only in this world for an amount of time and i am going to do everything i want to do while im here and ive got no dought i may have to compromise on some things but i do believe a positive outlook on life is essential 😄

[honor1a in reply to Hopey]

Hi Hopey,

i apologise if i appear thick, but what is ctd & mctd/sle? these abbreviations I've never come accross thanks Honor 😃 xx

[Lotus954 in reply to Hopey]

Attitude is everything in life. It won't take away what you have, but it sure will help you cope better. Just controlling your life rather than your condition doing it will help your life be better. Good for you!

[barchhe in reply to Lotus954]

Wow... right on. You are what you think about. Having the right attitude is everything.

[Kath1952]

Hi Sharon, welcome to the group, sorry i can't help nothing i have had yet has worked on me, i even went through a very painful procedure Deep Root Nerve Block Injections on Saturday but as yet only a small percentage of back pain is better and my left leg is worse, i am still hoping in a few more days it will be better x

Hope you find something that helps you

[Artyrosie]

Sharon I've had it for 20+ years too, and like you never saw anyone or had any help until quite recently. Back then the illness wasn't even believed to be REAL so it wasn't worth asking for help. Gradually awareness has grown, but I learned so much by coming on here and learning about possible treatments etc. It was here that I discovered that Pain Clinics even existed, from which I was able to persuade my lovely GP to refer me. However, I read about people seeing rheumatologists and wonder what I am doing wrong?

What I'm trying to say is that having found your way here it will be a great resource for you to find out about your illness and the ways in which you might find some help. We all know not to expect too much as there are as yet no quick fixes or easy answers, but what you'll also find here is a community of people who know what its like and who CARE.

[honor1a]

Hello Sharon,

welcome to this fantastic friendly & helpful site, I've suffered fibro for many a long year, I've identified back to 1994 when the pains were severe enough to affect my lifestyle, but know now with hindsight, I've been suffering with earlier signs of fibro, that you tend to put down to, I've been really extra busy last couple of days, just things catching up with me or i went for an extra long walk yesterday my legs were like jelly, so feel a little more tired than usual today! If i knew then what i know now, i would have taken things at a slightly slower pace been more body aware not ending up with muscle relaxants, i would have put into practice some of the things i now practice, for example, I've come off all prescribed medications for fibro, as they only changed type of pain but not the severity of it, i go to the swimming pool before i taught myself to swim i just walked up & down the pool as being in the water supports the painful muscles & joints (my only pain free time) but it's also a way of getting gentle exercise, the strongest pain relief i take & only on my extremely bad days is paracetamol & not always the 4 x 2 tablets a day, the depression especially in the winter months is horrible, i've had to take anti- depressants. the reason i cut down prescribed medications i feel I'm putting in an unknown amount of toxins that could be really creating health problems, for example while i was working i was put on Diclofenac i was talking 150mg over the day, which i weaned myself off, told my doctor, who said Well done, if you can manage without them, it would be better, 8 years later publicity is that Diclofenac trade name Voltarol, has now been found to cause strokes & heart attacks!!! Sorry I've gone on & on, i understand if you gave up reading this post 😂😂😂😂 love & hugs to you Sharon keep well xxx

[Matrix]

Hello Sharon ,I'm 63 and have had fibro since I was twelve and for most of those years until I was so desperate at age 33. with 3 children and being in such pain when I put my feet on the ground pain would rush up to my neck etc .When I was twelve it was growing pains ,only it wasn't .All I know is getting a hobby helps to distract from pain well that's on a good day .Wishing you well and remember your not alone we are here for you .X

[barchhe in reply to Matrix]

Was the pain in your neck like a stiff neck? I woke up April 1 with a severe stiff neck and has subsided some, but has not gone away. They don't know if it is my fybro or if I have a problem with my neck. I am taking Lyrica... no help.

[Matrix in reply to barchhe]

Hi sweetie oh my neck it nearly drove me to suicide and I'm not kidding .It hurt and my shoulde hurt bad too.I got help from an osteopath ,it took ages before she sorted it but it's manageable now.I found that as long as I sit and look straight on and don't twist my spine and sometimes if it flares up when it really hurts I have a soft collar that I use sort term only .i do have a problem at top of my spine its a small curvature .If you have t got a collar roll a towel or anything that you can Velcro in place will work .X

[cas1975]

Hi I have had fibro for 15 years and have gone thru a lot to figure this out on my own!! I've had 3 very difficult years and decided to take a year off of work to figure this all out. I feel like I have 'been through the ringer' ..... so..... tho everyone is different.... this is what I have learned:

* if you can... you need to have a flexible schedule so that you can do what you need to do for yourself when needed.... I was anchor for my family and job throughout these years...... I have now retired-- but I was able to!!! Try in whatever ways to put your needs 1st!!!!

* i need a lot of sleep.... make sure you are getting good restorative rest/sleep!!! take cat naps as needed.... 20 minutes can do wonders!!

** Exercise!!!! ... anything..... !.... walking, biking, swimming is great!! I also do stretches, wghts and balance activities.... I am not a 'natural' exercise/physical' person.... so I do schedule 1-2 sessions with a trainer a month, just to keep me on track/consistent/accountable and doing things correctly. $ ?? ... Yes. but if it keeps me going to the gym... it is worth it!!!!

*** keep active in other ways such as gardening, team sports, etc. but..... DO NOT over do it!! STOP before you feel tired or have had 'enough'!! If you go too long.... you will pay for it the next day!!! You might feel fine at the time.... but not the tomorrow! So.... do things in short bit. And.... busy one day??.... Plan for 'down' day the next....... I know-- this is hard! Remember-- U 1st!

**** For activities around the house, yard, play, etc. I have heard '20 minutes doing, 10 minute rest.... I have a hard time sticking to that too, when I feel good!.... Just try to take breaks so that you are ok the next day. If you are in bed the whole next day... that is wasting more of your time than 'pacing'! I think i've said enough about that

***** Chiropractic adjustments and theraputic style massages has helped me

***** I will now be checking into acupuncture and maybe Rayki (spelling??) .... think outside the box as much as you are comfortable

***Don't take on too much yourself.... have/ask for help! Want to entertain?? ... have a pot luck Having a holiday at your house?? ask family members come day before to start food ahead of time or set the table, etc. and then give jobs to people the day of.... You no longer need to be a 'One Man Band' !!!!

**** Medications?? Yes.... I use them. I would rather not..... and some people want to avoid at all costs due to side affects, what they 'do to you', etc. .... whatever they think. But.... after all of this.... I want to feel good/better on a day to day life basis than feel consistently crummy or so-so each and every day. I am taking Quality over Quantity..... if it really comes to that.... and I am not sure that it does with most drugs.

I am on an antidepressant and pain killer.... both have been very effective for me and I appreciate it!!!!

**** Practice......'Mindfullness' and meditation

**** Yoga stretches!!

*** Read inspirational books..... poetry...... etc. Quite 'you' time!

*** Watch, read, whatever that makes you smile/laugh..... Go to your happy place!!

**** Journal to see your progress..... or look back to pin point what helps you and what is difficult for you and then plan accordingly by adding in or taking things out....

**** Healthy diet i don't go 'way out there' with different/strange stuff or suppliments.... just regular balanced/good stuff.... tho i try to eat more of some things and less of other things..... yes.... i do keep track of what is 'inflammatory', etc. I have other health things such as high cholesterol.... So.....You will need to decide what's good for you.

***** Have fun-- connect with friends.... let them know about your condition.... and that some times if you plan something ahead of time.... you just might not feel well enough that day.... But PLAN for it.... have a 'slow' day the day before, get a good night sleep, etc..... so you are ready for FUN!!

*** Do small things for others so that you don't develop a life that is "all/only about me"

*** Surround yourself with a good 'team' of people that are your core. Good friends that understand you... good drs. that you have faith in..... i go to a social worker a couple of times a month to 'talk' so that I can save my friends for friendship and not as my counselors..... 'alternative practices' people..... whatever/whomever you need for you..... like an excellent hair dresser!!!

Lastly....... Stick up for yourself!! Don't be bullied or shamed if you need something or if someone doesn't understand why you won't/can't do something..... You are first!!! Ex: for me..... My dad has always expected a lot of me. He wants my home/yard/life to be the way he wants it.... that no longer works for me.... so I have had to have some pretty frank talks with him about that..... So be it!!

There ...... that should get you started!!

And..... I am hoping that this site can be something as I have just written... a positive place where we can share, encourage, understand, support, suggest, give feed back, ask and answer questions, tell funny happenings about our experiences, a sounding board, etc. That's how I would define support.

Happy trails!!

cas

[Keeleybee in reply to cas1975]

Hi cas, I shall be taking on board what you have wrote great advise!

Keeley x

[Lotus954]

Hi, Sharon! You will be happy that you found us! Ask questions, complain about you are feeling today, get an uplifting laugh from the Daily pics...everyone on this site is in your same condition and we totally understand. We'll never get tired of hearing what's happening to you. We'll never get tired of sharing what's helped us cope or resolve various expressions of Fibro. Please be yourself here. We'll love you and support you. Welcome home!

[barchhe]

I think I have had fibro for several years, but only recently diagnosed. I was also diagnosed with dermatomyositis. I just went to the Mayo clinic yesterday and will be going again on Friday for a nerve conduction test. I have been experiencing extreme pain in my neck (like a severe stiff neck) since waking up on April 1. No one knows for sure what is wrong with me. They don't know if it is the fybro or if I have a problem with my neck not related to the fibro. I have exteme pain in my thighs upon standing from a sitting position, but seems to get better as I walk. Are you on any medication for fibro. I have been on Lyrica for just over a month and have had no relief. I will be seeing my rheumatoid doctor on Monday and will have some tough questions for him. Fibro is no fun and so much understood even in the medical community. And when you add dermatomyositis to that it's even worse. I look like a fit, normal person... but inside, I'm a mess. I am so sick of hurting all the time.

[TheAuthor]

Hi and welcome to the forum and it is wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun! I want to sincerely wish you all the best of luck.

Al my hopes and dreams for you

Ken

[Hopey]

Sorry honor1a i havent been in fir a while ctd is conective tissue disease because i have a speckled ana and positive anti rnp this is an indication it could be mctd (mixed conective tissue disease) or sle (lupus)😁