Positive fibromyalgia stories?

Bones, joints and muscles
1

I would really love to hear some positive stories from fibromyalgia patients. I know someone who was out of work with fibromyalgia for a few years and is now back at work full time for the last 10 years. 

I worry about being able to work in the long term (currently working fulltime), so I find it very uplifting to hear that someone who has had fibromyalgia for a long time is managing to hold down a fulltime job (and coping well at it), and whose symptoms have improved over time.

Does anyone have a positive fibromyalgia story to share? 

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Hi airyfairy85

I have had Fibro and ME since I was 14. After completing all my training I worked full time from aged 22 - 27 when I went part-time due to becoming a Mum. I stayed part-time for 3 years then starting working for myself for 5 years. I worked full time amount of hours each week whilst juggling 2 kids and a heavy DIY workload. Over the last year I have really gone down hill. I work part time still self employed, still juggling the 2 kids and a reduced DIY amount. However, it is the ME which has made me go part-time not the Fibro! So my story so far is more an on going positive Fibro story. If it wasn't for the ME I would still be doing full time hours. So I recommend not getting ME (Fibro and ME do not go well together). For Fibro it was a case of keep going, for ME you should rest - so guess what - if I please one the other gives me a hard time smile. Maybe for some it's not that they can tell you an amazing story but more about see what they have achieved even though they have Fibro? They fight through the pain and still achieve othings. I also help run a Brownie Unit. Yes end of every Brownie session I collapse on the bed in pain and my friends and family say I should stop. However, for 2 hours each week I've helped the girls have a nice time.  I think about them and they make me smile. They help me push through the pain. Someone I knew said look and praise what you have done not what you haven't managed to do. Must admit I could do with remembering that one myself when the 'to do' list keeps getting longer rather than shorter wink 

3

NOT ME PERSONALY  but the lady who used to do my reflexolgy  is a fibro sufferer,gave it up because it was to painful for her to do and listening to peoples troubles added to her stress.

she changed to do wedding planning and has very positive results because she is happy in her work now.

4

Hi AiryFairy85,

You want something positive, then look at your own capability first. You are working full time = great.  I have had Fibro for 5+ years now, see the new discussion started by 'luke89578' which includes advice from me plus my storry at the end.

I am 63 years old, work as a civil servant for a Defra Agency, that has strong attendance/sickness policies. I get up at 5.17am and sometimes (most days) do 9 hours plus, coping with a 14 mile car journey and a Park&Ride.  I walk anything upto 5 miles during the weekend with my wife and our dogs, have a massive allotment which feeds not just us but my team of twelve at work. 

You need to always look to the positive, "I can do this, even if slowly, I can still do this".  It is my positive don't give in attitude that gets me through the bad days.  Talk to your direct boss, explain you have good and bad days, but you will always do your best what ever the day.  There are Acts of Parliment that will help cover you. ask your employer about the Disability Act, how do they register disabled people, what do they class as disabled.  Ask about the Equality Act, push your employer to look at you in a different light. Someone who has major problems but doesn't give in.

If you want positive, then keep in touch through your link here.  I support 5 people on the team I manage with all sorts of health problems, the lovely lass of 27 years who sits next to me, had cancer of the larynx when she was 9 years old, has a hole in her throut that she breathes through, suffers colds and coughs constantly, yet shows me up for determination to get to work. 

Just look at what you can still do, and then start adding things to that list, you will be surprised just how many things you can do and enjoy.

Positive starts with you, let me know how you feel and change your 'can do' list. 

 

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I love when people ask for positive fibro stories. Most of the time all you hear about is the negative ones. Here is mine. I hope it empowers and inspires at least one person.

I was recently asked, "What has fibromyalgia and/or chronic pain taught you about yourself".

Here is my answer.

I have learned so much and continue to learn about myself through this journey of pain. If there is one quote that sums it up for me, it is, "My pain birthed my purpose". - Trent Shelton.

I have always known that I was meant to help others, but I never knew in what capacity. I have had medical problems most of my life (mainly migraine headaches and girl problems) and have just learned to manage them, but in 2007 when I was diagnosed with Fibromyalgia and Reynaud's Syndrome, my whole world changed. I could no longer work, I was constantly drugged up on pharmaceuticals, got kicked out of my apartment, car repossessed, lost friends, moved in with my mother. At age 27, my so far successful life was spiraling out of control. Then, along came cannabis. I couldn't believe how much it helped me. Living in California, I had the opportunity to grow my own medicine, so I did. I was slowly beginning to pick up my life. I started using cannabis daily, exercised, changed my diet, started meditating, and really started to concentrate on what my body was telling me and trying options rather than the "magic pill" I thought would take it all away. I started working (my body could only handle about 30 hour a week, but I went), moved in to a new place, bought a car, and started picking up the pieces. During this process, I realized I couldn't exactly go back to my corporate recruiting job and toke up in the lobby of the high rise, plus smoking gave me a high that made it hard to focus. I had to find other ways to use this plant. I decided to try to infuse some oil using the cannabis flowers I had grown. After rubbing it on my painful spots for the first time, I knew I had found what I needed. This was perfect because I was about to be hired to a great company supporting the president and I needed to be clear headed and able to manage my pain throughout the day. I could add a few essential oils and nobody would even know I was using my medication at work, and I was focused since topicals do not typically provide a psychoactive response.

In my off time, I started working on a concept for my new company, Therapy in a Bottle. I slowly developed a line of cannabis topical products that sold in several California dispensaries. Through that experience, I learned that a lot of the people that I needed to reach with these products, were not going in to dispensaries, and I also couldn't reach out to anyone outside of California due to federal law. I sat down with some of my herbalist friends, did some research and found a group of botanicals that were proven to be very helpful in reducing inflammation when used topically. The decision to create a second line of products was an easy one to make. I worked very hard to come up with a formula that offered the same therapeutic value and level of efficacy as the cannabis would. It's a well-balanced synergistic botanical blend.

When I lost my corporate job last year due to layoffs, I decided to try my hardest to work on Therapy in a Bottle full time. I completed the development of the non-cannabis line and reformulated the cannabis line to include all of these other wonderful botanicals that were working so well for pain. Now, my company makes enough to pay the bills and overhead costs, and we are continuing to grow organically. I love the opportunities I have to go in to senior communities and veteran halls to talk about botanical therapies and let them try samples of the products (only non-cannabis) to see for themselves the miracle of nature. It makes me happy to help others see the alternative options that are inexpensive and readily available to them. When I get an email or phone call from someone saying that they have gone off of their pain meds by using our salve or they avoided surgery after trying our products, it melts my heart. Those personal testimonies are like gold to me. Knowing that my grandmother can get relief from her arthritis by just soaking her hands in our soak and rubbing the salve on makes me feel like I have given her a wonderful gift.

I still struggle sometimes to manage my pain, but I have built an amazing box of tools to help me conquer that daily challenge. On the days that I feel like giving up, I make sure to re-read the testimonies and keep moving forward.

So now you can see why the quote makes sense. My pain really did birth my purpose. Fibromyalgia and other chronic pain conditions do not have to define us. They become a part of our lives, but they do not DESERVE to encompass our lives. I've learned that I am courageous, strong, powerful, driven and empathetic. I deserve happiness and health. My life is important and meaningful. I've learned that even in the face of adversity, I can conquer anything.

6

I know this question is from awhile ago, but I just wanted to say I am a young person who was diagnosed last year.

I too was looking for hope and inspiration.  All I kept hearing was people who couldn't work, disabled, lives destroyed.

And mine was destroyed.  For a time. 

The recovery was slow, but month by month I was improving.  I went from bed-ridden to working and now doing my medical residency (I'm a doctor). 

Residency is like 90 hours plus of intense work, so if I can do this after developing fibro, it's doable.

I still have pain, fatigue, and some mental confusion at times.  But it is NOTHING like when I first developed it.

A combination of meds (antidepressants), getting enough sleep and a little stretching here and there have brought me to this point.

Trust me.  There is hope.

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Hi, I know your post was a while ago but I'd really like to get some info from you . I think I have fibro & really need some good positive advice as I can feel my life draining away . I'm gonna send you a pm hope that's ok

Sare

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Hi Shell333,

I was wondering what anti depressants you take and how much you feel it's helped you? I hope you can answer this even though this post is from so long ago.

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Here;s my mantra which I have shared before but it puts a positive note on it

I have seen better days

but I*ve also seen worse

I do not have everything that I want

but I have all I need

I woke up with some aches and pains

but I woke up

my life may not be perfect

but I am blessed.

I still manage to hold down a job, an compete with my dog, and I believe she has kept me positive - she needs walking and care daily and she doesn't mind how I feel or look she is still pleased to see me.   I have had to make some adjustments to my life but so have lots of people for other reasons. Fibro is not the end just a different way of life and none of us knows what the future holds with or without a fibro diagnosis. I do not allow fibro to define who I am.  I am the same person I just happen to have fibro.

10

I think I might have a positive fibromyalgia story to share, but given how unpredictable fibromyalgia is it could all go downhill very quickly. 

TLDR version: got nasty fibro symptoms, tried natural/holistic treatments without success, the standard FDA approved treatment (Cymbalta) reduced fibro symptoms by around 80%, I am essentially back to the way I was before. 

Dec 15: Symptoms started with parathesia of the ankle, progressed to paraesthesia and pain in all major body parts. Pain varied from a 3 - 6 on a 1-10 scale. 

Dec 16 - Feb 16: I googled Fibromyalgia, and read all these scary stories about what the anti-depressants and anti-convulsants (Pregablin, Duloxetine, Amilipityrne, etc) will do to you. Decided to go the natural/holistic route:

 - Gluten free, MSG and Aspartate Free

 - Overdosing vitamins - Vitamin B, C, Magnesium, Curcumin, CoQ10, Fish Oil

 - Warm water exercises

 - Yoga and mild exercises

 - Also had heaps, heaps of tests etc to rule out misdiagnosis. 

I got these ideas from naturopathic sites. 

None of these worked. I don't think I even experienced a temporary placebo effect. 

March 16: With my symptoms deteriorating (the whole body parathesia and pain had been joined by muscle spasms, stabbing sensations, and constant nausea/burping) I gave in and booked an appointment with a psychiatrist. 

April 16: The psychiatrist put me on Cymbalta (60mg/day). I experienced mild initial side effects - a feeling of nausea/vertigo around midday (morning dose), and when I yawned. These side effects disappeared after a week and have not returned. 

June 16: My symptoms are down to 1-3/10 pain each day, as opposed to the 3-6/10 I was on before. Of the 1-3/10 pain each day, around 50% of that could be attributable to non-fibromyalgia causes i.e. bad posture, carrying heavy things, overexercise, etc. In fact, the only remaining fibromyalgia symptom that bothers me is back pain, which comes and goes for hours at a time. 

August 2016: Symptoms have held steady since June. Given that my only real health issue right now is back pain I suspect I may no longer qualify for a diagnosis of fibromyalgia. 

Moral of my story: Don't believe what you read about natural/holistic cures online. Listen to your (real) doctor, and take on their treatments. And finally, don't believe that the horror stories that people post on forums - most people like me just move on with their lives. Am I a different person now compared to when I first got fibro? I doubt it - the suffering was intense while it lasted, but mercifully short lived. 

11

hi john 

thNks , it's really good to see something positive . I hope things continue to go well for you. 

I don't have a diagnosis yet ,but have so many odd symptoms its hrs to believe I don't have fibro ,even though a rheumatologist doesn't think I do have it. 

Can I ask if you had trouble sleeping ? And how your sleep is now on the cymbalta? 

Like you I've read all the horror stories ,but if it turns out I do have fibro I think I should at least try it.

can I also ask about the parasthesia , sometimes my feet feel odd when I'm walking , they aren't numb cos I have no loss of sensation of I touch them . The dr seems to think this is all anxiety related but I'm not convinced. I have insomnia ,back pain ,hip pain and now hand pain . 

I am very anxious about it all though ...don't know what to think 😬

Anyway ,it's good to hear a story of someone who isn't bed bound and given up everything . That's what terrifies me .

thanks ,,Sare 

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Hi Sare,

Sleeping: Cymbalta made no difference to my sleeping patterns. It takes me half an hour to get to sleep, I sleep in 2 hour phases, and I usually stay awake for half an hour around 3 am.

Parenthesia: You know that feeling when you fall asleep on your arm of frozen numbness, then pins and needles as the blood returns to your arm? That was how I felt, all across my body.

Anxiety: if the rheumatologist doesn't think it's fibro, and it's anxiety instead you may wish to see a psychiatrist.

Not bed bound and given up everything: definitely. 6 months ago I thought I would be in a wheelchair by Christmas if my symptoms progressed in a linear fashion. Thankfully they've reversed even faster than they progressed.

I've always been an overachiever and had a very clear vision if the life I wanted to lice. When I got fibro I was in mourning for the life I thought I should have had - thankfully I'm now back on track, albeit 6 months behind.

What I have learned is the importance of conserving the health I do have left - I'm currently researching the top illnesses that afflict people of my race, gender and class in their 30s,40s,50s etc and building a preventative plan to address them. I'm also taking the money I've saved from not buying ineffective vitamin and herbal supplements and donating it to chronic pain medical research at my local university.

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Do you have a web site

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Hey! What combination of antidepressants are you taking? I'm a medical student too and I've been diagnosed with fibromyalgia...I really can't work anymore,study or do my job.