Fellow Fibromyalgia Sufferers

[StayingStrong85]

Hello all. I posted my story about fibromyalgia not long ago on here. The feedback was amazing and to actually just speak to people that truly understand my symptoms and feelings dealing with this condition was brilliant. Before I got sick my passion was photography and filming. My body can’t or won’t work like it used to but I’m still me! Moving forward I’ve decided to produce a small but much needed video blog style mini series to not only talk about how this has effected myself but also talk about dealing techniques I’ve learned so far but most importantly hear from you all too. This is all relatively new to me, however so many of you hear have been dealing with this condition years. If any of you would like to either message me, post on hear or just communicate in general regarding your situation and coping techniques that would be amazing! I will post it on YouTube and the like but mostly it’s for instagram as I feel it’s easier to reach out to people on there.

Edited by admin members may PM for link

Kind Regards

Chris

[softblanket]

Hi stayingstrong85

I'm relatively new on this forum and have also found it a light at the end of a struggling tunnel. I was diagnosed late last year with fibro, although many of my symptoms I can identify with so many others on here I've suffered with for many years. Like yourself I have found it very emotional to accept that I can not do some of general activities I enjoyed. I have dogs whom I love so much and cant cope with not being able to walk and play with them like I could a year and half ago. It literally breaks my heart. But I'm determined to fight back my mobility and have physio in a couple of weeks. Your video sounds inspiring and I will definitely have a look at it on Instagram. If you have any techniques on insomnia (beware I've tried most) that would be awesome - I'm a non -sleep rollercoaster ✌🎢.. Stay 💪🏽💪🏽🤗

[StayingStrong85 in reply to softblanket]

I completely feel the same. For me this all started going downhill rapidly this time next year, however I was getting on off sick for months before that and doctors just felt I was unlucky and getting bug after bug! We all have to stick together to fight on. I’ll trying to grab feedback from fellow sufferers and giving my own take too. For me the best thing to help me sleep and reduce my symptoms massively has been Amitriptyline and I’d guess the doctors recommended that for you already? If not it’s literally the best medication I’ve had to treat this. Apart from that it’s diet change and mix of pills I feel help. Sadly we don’t all work the same but I’ll try anything to feel more “normal” again!

Kind regards

Chris

[Make_a_Change in reply to StayingStrong85]

Hi Chris, how did you change your diet? What worked for you?

Thanks again for sharing.

[Make_a_Change]

Excellent idea, Chris, I look foward to hearing more. I am a physiotherapist keen to learn how to better supoort and help fibromyalgia sufferers. Understand better what they want from their physiotherapist, would love to hear from you. Best wishes.

[stollerydd in reply to Make_a_Change]

Nice to read a professional is interested in learning from the sufferers themselves. My grandmother and mother each suffered with this illness. I have had it for over 50 years. I need to be sure to point out however, that early on I knew there was something wrong with me, but was able to deal with it. But there were stages or various levels of increasing pain. The last 10 years have been miserable. And not just from Fibro itself, but from having to deal with SOME professionals that think they know more about Fibromyalgia than I do. I just recently quit dealing with a quack, err, professional who looked me in the eye when I said, well, in fairness to doctors who are trying to help it can't be easy to help us when no one know what causes Fibromyalgia. Because no one does. Ah, but not my doctor. He taps his head with his forefinger and arrogantly proclaims, well, I do! It's all in the patient's head. After that revelation I walked out never to be returned. Doctors, professionals, and the rest of us mere mortals should always be locked in the learning mode,

[StayingStrong85 in reply to stollerydd]

Hey, thanks for your reply! Ohh I’m no professional sadly just a guy with this horrible condition who’s using my video experience and online media we all sometimes take for granted to push some videos out that might help us all understand and feel better for if we all share our feedback and experience about this horrible condition! That doctor sadly isn’t alone with that few. My main doctor understands how crap this is for us but others simply think we are nuts or weak! or both! They don’t get I went from working full time and hitting the gym with a personal trainer to suffering with the worst flu like symptoms I’ve ever had to this! The change is nuts and we simply have no clue what causes it! It doesn’t run in my family so it’s also more baffling!

Kind regards

Chris

Kind regards

Chris

[stollerydd in reply to StayingStrong85]

Don't know which side of the pond you're on, but I'm in Florida. Sometimes I have to explain to a new doctor that I used to be rated in the top 10 racquetball players in NW Florida. Played golf to as low as a 2 handicap. Went to the gym twice a week. Jogged twice a week. In high school was scouted by 2 pro baseball teams. Was offered a college scholarship at one school for soccer and another for baseball. I tell the doctor that so they understood that if I could get my daily pain level from around 8 to a 5 (which would still devastate the AVERAGE/NORMAL person (which we are not) I'd go right back to the gym. I'm therefore not lazy or a crybaby. I loved working out and being healthy. Don't smoke or drink and yet, as I learned, Fibro, THE BEAST, will target anyone. So now I struggle to walk down the driveway to get the morning paper. BTW, I just found something that a female nurse gave me a few years back. She has Fibro also.

.............FIBROMYALGIA..............

It's steals your body

It steals your energy

It steals your health

It steals your mind

It steals your sleep

It steals your friends

It steals your happiness

It steals your fun

It steals your special moments

It steals your careers

It steals the person you used to be

All of the above observations we sufferers can attest to. Unfortunately.

Don

[StayingStrong85 in reply to stollerydd]

I’m over in the UK. But my god it’s crazy how this condition is so understood! It’s 2019 and this isn’t a new condition. It’s horrible how much we suffer and nobody can relate to us as it’s like nothing I’ve ever felt before. We just have to keep fighting and hope one day they work out what the hell is the cause and how to fix it!

[stollerydd in reply to StayingStrong85]

I've read just recently that a number of doctors are beginning to believe it's a wiring issue in the brain.

[Make_a_Change in reply to stollerydd]

Hi Don, sorry to hear your pain is so bad. Is there ever a time, position, activity, nights sleep that helps? I hope you have some way of easing the pain.

[Make_a_Change in reply to StayingStrong85]

Hi Chris, was there a trigger for you at all, even the smallest thing? or did it just come out of the blue?

[Make_a_Change in reply to stollerydd]

Dear stollerydd, I don't blame you for walking out, in fact well done. Sorry to hear your last 10 years have been so hard. How have you coped? What has helped? Best wishes.

[stollerydd in reply to Make_a_Change]

Though I'll be 72 in August I still operate a small, thriving computer business. What has helped me was being brought up by parents that believed in hard work and being a person who honors his word. By that I mean when I tell a customer that I'll have their machine repaired and back to them by a certain date I strive to do so. That forces me to get up in the morning regardless of whether I feel horrible or not and get to work. Which means, move. However, I'd be less than candid if I indicated there were times THE BEAST didn't win. On those days I contact my customers from home and explain my health was putting me an extra day behind the power curve. And so far everyone has understood. Still, as everyone with Fibro knows the 24/7 battle with the beast is exhausting. Exhausting! Lastly, this site and the people on it feel theyll always have a home where they're welcome and where others will not only understand, but not be judgemental. Before I end this post I wanted to share something that other Fibro folks will understand. And likely, after they read this post, will shake their heads and say out loud, "oh yeah, been down that road too,". A customer says, "so how are you feeling? Any better?" "No, not really. Just holding my own and hanging in there." "Oh yeah. I definitely understand what you're going through. The other day I stubbed my toe and the pain has been horrible. Am in my 3rd day of pain and, LIKE YOU, don't know how much more I can stand." And I said, dripping with sarcasm she didn't pick up on, "gee whizz, I sure hope things get better for you. Must be miserable being in so much pain." "Oh, it is." And she left. And I thought to myself, I and my fellow Fibro sufferers could stubb our toe and probably not even feel it. The other day during a dental exam an xray revealed I had a severe abscess. The Dentist said, "how can you stand the pain associated with this degree of infection?" "Um, what pain? If the pain in my body is worse than what you normally expect from an infection like you've described I wouldn't even feel it." And he walked away saying he couldn't imagine that kind of pain. Welcome to our world.

[StayingStrong85 in reply to Make_a_Change]

Thank for your reply. I’m really just grabbing bits of tips and giving my own personal experience on it for me and trying to get us all together to better understand this horrible condition!

Kind regards

Chris

[Hidden in reply to StayingStrong85]

Hi

Thank you for the info. It's not right that some drs say it's in the mind, they'd think differently if it was them!!! I was diagnosed about 18 months ago, I've been very lucky with support and all of you on here. I have many other issues which give me pain as I'm sure all of you do too. I was a teaching assistant, breakfast lunch worker, dinner lady and did football after school. My boss was and is fantastic but with her advice I too ill health retirement last June. Very sad day, I was 52 at the time. I had a little walk yesterday and had to phone my friend to pick me up, legs gone to jelly, pain and could hardly move!! So upsetting. Hope you all manage to get some sleep. Love and hugs Lynne xxxx

[Make_a_Change in reply to Hidden]

Lynne well done for getting out for a walk. Small steps. Or in the words of another fibro sufferer, '1 step forward, 2 steps back'. Actually though in your case more than a few steps forward then a lift back, its all in the right direction 😊

[Hidden in reply to Make_a_Change]

Thank you. How are you feeling? Take care Lynne