How I recovered from Fibromyalgia

By Jenny rated 8.8 out of 10, viewed 32688 times
How did it start

I was walking around a car boot sale when I felt a throbbing pain in both my hips, by the time I got home the pain had increased. I didn’t think anything of it and spent the afternoon with my feet up. When I woke up the next day my muscles and joints felt so stiff that I could only walk around like I was 100 years old not 29. As the week went on the pain gradually crept up my back and I decided it was time to see my GP. I immediately had 5 blood tests for arthritis, rheumatism and some general blood disorders. Of course they all came back negative.

My symptoms
· Initially a urine infection
· Chronic widespread pain in almost every muscle but always worse in
hips and back
· Regular headaches
· Restless legs
· Joints continually “cracking”
· Very dehydrated
· Exhausted all day, asleep by 8pm most nights & sleeping for at
least 11 hours

I carried on going to work, although as each day went past the pain (which I can only describe as each muscle being yanked in opposite directions) continued to spread into every muscle in my body. Although I was sleeping well each night I was extremely exhausted all day and was usually asleep on the sofa by 8pm. As the weeks went by I was having more and more time off work, which to me, as I am very conscientious found almost more stressful than actually going in.

The blood tests and drugs

Over the course of the next 3 months I had over 40 blood tests, all-negative, 3 x-rays and tried and tested so many different drugs from diazepam to steroid injections none of which worked. I also had physiotherapy for 2 months with no relief. I saw two top specialists in Sussex, the first I saw every week for approximately 2 months. His final words to me were “I am sorry there is nothing more I can do for you, I am sure it will go in its own time,“ – this was the only time in 3 months I had cried. My father had carried me into his office, as the pain was unbearable and to hear a top specialist telling you he had no answer was devastating. Particularly as I had got to the point whereby even the worst news I could accept because then I could plan how to deal with it.

On my final visit to the first specialist he recommended I try Pregabalin – finally my wonder drug that worked almost instantaneously. I later heard from my GP that Pregabalin is often one of the first drugs given to treat Fibromyalgia sufferers and the likelihood is that this specialist did not believe Fibromyalgia exists – there are still a lot of old school GPs out there – always get a second opinion!

I was then recommended another specialist at the Goring Hall Hospital, who was my hero, within 5 minutes of being with him, he said without a doubt you have Fibromyalgia. His simple test was to apply pressure onto the tender points around the 4 quadrants of the body and pain was felt in all 18.

Although the Pregabalin pretty much numbed the pain, my immune system was still extremely low, (I had an abnormally low white blood cell count) so as well as having the virus I was constantly ill with infection after infection (mainly throat and chest) including an infection whereby my ankles were so swollen that I had to be on crutches. I also had chronic IBS and a hiatus hernia within the first month of getting the virus. The other problem I found with having the virus was that any other illness/infection I picked up along the way the GP would always blame it on the virus. For example, even though I complained to my GP that I felt like I had a rock in my oesophagus - my hernia was still undetected for 3 months until I had an endoscopic camera put down my throat.

I have no doubt in my mind that I got fibromyaliga due to the combination of the lack of water in my body, a highly stressful job, drinking heavily 3 or 4 nights a week and my low immune system which meant I became very suspectible to illness.

How I got better

The specialist I saw at Goring Hall advised me to change my lifestyle as I was currently in a managerial position of a Hotel with a “work hard-play-hard attitude”

He was very direct and told me that Fibromyaglia was for life but that I could make the best of it. He said, which has definitely stuck with me, that my positive attitude has kept me out of a wheelchair and advised however difficult to try and keep that positive mentality… which I have.

He reiterated the importance of exercise but as I was so exhausted and in so much pain, I really had use to all my inner strength to motivate myself. He also recommended hydrotherapy, but I was unable to find a pool closeby.

I was recommended an excellent Acupuncturist in Rottingdean who I totally felt helped me on my quest to get better. He had a look at all my blood test results and immediately pointed out (which no doctor had done before) that I had almost no water in my body and that if I continued it could be very serious as all my vital organs were extremely dehydrated. I then told him that I had been drinking about 2 litres (if not more) of diet coke a day, never drunk water and very rarely drunk any other drinks (other than alcohol) for about 10 years. We looked at the holistic approach and I put the following lifestyle changes into action: -

· I gave up diet coke and drank 2 litres of water a day
· I gave up alcohol and cigarettes
· I resigned from my job and worked as much as I could in my
father's company doing basic administration
· Giving up my job meant 2 hours less commuting time in the car and
therefore more exercise in the form of walking
· I tried to go swimming at least once a week.
· I ate as much fruit and vegetables as I could.
· I had acupuncture once a week

As time went on, even though I was on quite a strong dosage of drugs, I felt my immune system was getting stronger and stronger as I was no longer picking up any infections. After being on Pregabalin for about a year I consulted my doctor about decreasing the dosage, which I did gradually to nothing over the course of 6 months. I have now been totally drugless for over a year and I, 100% believe it was changing my lifestyle, which helped me beat Fibromyalgia. In the last year I have had 1 attack, just before my wedding, which showed me how important it is to try and keep my stress at a bay, as this is obviously a trigger.

I am proof that it is possible to beat Fibromyalgia and I am sure you will have the same success as I did. I do try to live by the mantra “positive things happen to positive people.” Although I fully acknowledge it is easier said than done but I hope my story gives you the inspiration!



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Related Websites
http://www.fibromyalgia-associationuk.org
Fibromyalgia Association UK
http://www.fibromyalgia-symptoms.org
This site includes a forum, as well as articles and treatments for Fibromyalgia.
http://www.fightingfatigue.org
Blogs, articles and lists of web resources for CFS and Fibromyalgia
http://www.healingwell.com/pages/
HealingWell.com Resource Directory
http://www.ibs-relief.co.uk
http://www.ukfibromyalgia.com/


Comments
By Ian, 26-May-2009 14:14
seems like you learnt the hard way that abusing your body with poor food + smoking etc has health consequences. The real killer in your list, is probably the 2 litres of diet coke per day. Aspartame is deadly toxic. Stay away.
By jan, 23-Oct-2009 03:51
I have fibro too and manage it like you with diet, as little stress as possible. i am a totally different 'me' now a new person. i think my body needed to rest 5years on and i am managing it really well, have started my own business in holistic therapies which is far less stressful than my old job. i agree with everything you have said, i haven't tried pregablin and feel i don't need to now as i am in control. well done you! aspartame is deadly sometimes i fancy a coke if i have just one small bottle i notice the difference in my body.
By jtw, 13-Feb-2012 14:43
DO ALL THESE LIKE IT'S YOUR RELIGION: Get lots of rest. Ask about an Rx of Remerol or similar medicine (resets the seratonin and other neurotransmitter balance in the brain). Lose weight. Swim as much as you can tolerate it. Reduce stress. Deep tissue massage therapy at least once a week. Non-inflammatory diet of chicken, turkey, 100% whole wheat bread, oatmeal, spinach every day. No alcohol, coffee, tea, sugar, msg, red meat. Take about 10-15 mg of zinc every day (builds muscles). Take Curcumin95 every day (keeps inflammation away). Take Omega 3 capsules every day. Take Calcium with Magnesium and Vitamin D every day. Take sublingual Vitamin B complex every day. Plan on feeling like crap for at least 3-4 years with a slow recovery for the following 2-3 years. YOU WILL GET BETTER! I DID! YOU WILL FULLY RECOVER! I DID! BEST OF LUCK...
By christian Stramaglia, 05-Apr-2012 23:13
I have been having problems with myofascial pain syndrome and fibromyalgia for almost a year now.I'm 23 and was in really good shape before it happened and I do everything right with diet and supplements but still feel horrible. Does the feeling of your muscles cracking every time you move ever go away?
By christian Stramaglia, 06-Apr-2012 14:07
I have been having problems with myofascial pain syndrome and fibromyalgia for almost a year now.I'm 23 and was in really good shape before it happened and I do everything right with diet and supplements but still feel horrible. Does the feeling of your muscles cracking every time you move ever go away?
By Jenny, 07-Apr-2012 11:07
Hi Christian I haven't had a reoccurance of any of the symptoms for around 3 years - so yes it is possible to be free of the pain etc. I believe that by assessing every part of your life to ensure you are leading a healthy one (physically and mentally) and then finding out what works for you -what is it that makes you feel better (is it myofascial massage, counselling, acupuncture, giving up your job/relationship?) and most importanly reducing anything that is stressful, you can get better. Don't give up, keep fighting until you reach the answers you need I hope you feel better very soon Jenny
By christian Stramaglia, 11-Apr-2012 23:28
I have been having problems with myofascial pain syndrome and fibromyalgia for almost a year now.I'm 23 and was in really good shape before it happened and I do everything right with diet and supplements but still feel horrible. Does the feeling of your muscles cracking every time you move ever go away?
By Christian Stramaglia, 13-Apr-2012 23:52
thank you for responding! i dont no why it reposted my same message but its really good to hear from someone that has had these symptoms say it got better. the myo trigger point from a massage therapist isnt doing any good so far but i want to try trigger point injections and maybe the pregabalin you mentioned. its really frustrating to have all these blood tests come back negative but again its good to hear someone who went through all of this already say they got better. how long was your entire recovery? and if there is anything else you can mention that helped you id appreciate it. thanks again for posting your recovery, there's so much on the internet of people not getting better it was overwhelming so finding your story has been huge for me.
By Jennifer, 23-Aug-2012 16:10
I know this is a little old but my 2 cents: stay away from TOXINS! In my case I believe that neurotoxins such as heavy metals (primarily mercury but also aluminum etc) and aspartame played a big role in the development of my fibo
By Jao from philippines, 11-Oct-2012 19:55
I am also suggesting from fibro for a year now. Get urself a copy of the book titled "from fatigued to fantastic" by Jacob tietelbaum.
By I have RA and know what pain is .yuk!Anyhoo Pain , 15-Oct-2012 20:07
I have RA and know what pain is .yuk!Anyhoo Pain killers are just a way of life, or pain maenaemgnt. I will add a link below to our pain maenaemgnt commission, it might come in handy to you.Only thing so far I have found to relieve some of the pain other then pain killers I do not react good to (you no the throwing up, knocks you out so you sleep all the time on and on) is cannabis. Legal in our state. Doesn't knock me out,no throwing up, I have seizures as well and some of the pain killers I had been on put me into one, known of these with this.It does not do anything for my body attacking itself, but have herd the medication out there that does slow this down has other health risks .I also take inflammatorys.Messages feel real good!! So does the hot tub (these days it is a hot bath tub lol). What ones body reacts too others do not.Good luck finding relief and go read up on pain maenaemgnt, the site may have some information to help you out?P.S. I went and looked up this fibromyalgia and it is recognized as a condition contrary to the first poster up there (so if this person is a real doctor where did he get his medical degree?). This seams to be a touchy issue on this board? Link below How can one say the pain one feels is not real pain?? I guess I just do not understand some people ..
By Dan Neuffer, 01-Aug-2013 02:21
Hi Jenny, Would you like to share your story in an interview? - I publish recovery interviews of people with fibromyalgia or CFS on my site - please contact me via my website called cfsunravelled! :)
By morette thompson, 12-Jun-2014 18:14
Your story was very inspiring. I was inspired to still have hope. I was especially happy to read you acknowledge the dehydrated state in fibromyalgia. What i will say to contradict you, is the cause. When i was struck down with fibromyalgia, i was at the peak of physical fitness. I did not abuse my body in anyway. I ate only healthy foods. I rarely drank alcohol. At 45 i looked liked a 25 year old. I had a great full time job with very little stress. I was happy. So why did it happen to me? I am glad i found your post as it gives me new hope. perhaps like you i can beat this after 3 years.
By Debbie, 15-Jun-2014 11:11
I am struggling at the moment to get my head round the diagnosis fibromyalgia. I am 47 and am in a negative state of mind. I have recently returned back to work after 7 weeks off followed by 5 weeks phased return. I can manage to get through my working day but have no energy to do housework etc. I used to walk everywhere as I don't drive and go the gym 3/4 times a week now I sleep bed by 7 sleep all weekend. Your story was a breath of fresh air Jenny. I am vegetarian and feel I eat a balanced diet I don't smoke and occasionally drink alcohol. I hope like you Jenny I can become more positive and move forward but at the moment I can't seem to see the light at the end of the tunnel.
By Marie, 27-Jun-2014 08:32
Hi Jenny, really loved reading your story. I have been recently diagnosed with fibromyalgia. There are so many negative stories out there, I would really love to hear other positive ones like yours. Great that you have such a positive attitude, I find it difficult to remain hopeful of recovery but hearing stories like yours really helps.
By Michelle Hamilton, 04-Aug-2014 11:53
I too have changed my life with fibro through diet and supplements. I run a facebook page Being Positive With Fibromyalgia You can read my story there. I was either in a wheelchair or on a cane and weighed 300 pounds. I went from being a superstar in management to barely living and then I changed everything!! Lost over 100 pounds and got my life back!! Getting ready to graduate college this month and I'll be 41 next month!!
By Robert Hunt, 19-Sep-2014 05:38
i started having symptom's in the late 80's when this was completely unheard of, spent alot of money trying to diagnose this, finally at bone + joint hospital where i had a total hip put in about 1978, they agreed finally and said this what i have, this was the early 90's and still unheard of or ignored by many doctor's, believe my came on from a bad auto accident where i fractured 25 bone's at once, the hip was one of those, many, many, rough day's and night's to follow as i tried to beat it with alcohol and hydrocodone, stopped drinking almost 2yrs now, and in the philippine's where not much anybody does about anything here, 2-season's here hot, and hot with rain, it still comes and goes at will 25+yrs later, dont have a clue what is the best method for this, don't wish this upon anyone, often wonder what my life would have been like if i was pain free,
By rj, 18-Feb-2015 02:14
Hi Michelle can I have your fb page link please. rvjones@ntlworld.com
By I love your site and blogs. I know so many people, 17-Oct-2015 13:15
I love your site and blogs. I know so many people now that have Fibro and it will be good to unrdestand through your blog about the disease and tips to pass along. My step-daughter was just diagnosed with stress myalgia.Bright Blessings,MaggieMaggie Lukowski recently posted..
By You always have such instreeting articles. The cu, 23-Dec-2015 12:46
You always have such instreeting articles. The current process of guessing, experimenting and hoping is just not good enough sounds like something I do when cooking without a recipe. I mentioned you on my blog linkup.
By S Maginn , 29-Aug-2016 06:05
I recently have been diagnosed with fibromyalgia. I'm at the stage i can't sleep at night with all the pain my body. I'm totally worn out with pain.
By neha, 22-Jun-2017 00:28
Hii Jenny, I am suffering from severe pain and doctor diagonized it with fibromylgia. Can you please help me how can I get recover from it. I tried to consult with so many doctors including Ayurveda treatment also.
By Linda , 28-Jun-2018 15:03
Hi, I was diagnosed with fibromyalgia 6 years ago, horrific the stiffness and aches, constant wakening through out any sleep period, (wakening up initially 10/25 times), changed my whole lifestyle, don't drink alcohol at all, eat only fresh fruit and produce, my fitness regimen will only go as far as swimming, (can't feel the pain under the water), I take the medication doc prescribed Gabapentine, anti depressants and Ibruphen which relieve the pain some what, I had acupuncture, physiotheraphy and cognitive therapy all of which didn't help, I gave up work, as I couldn't be a reliable employee anymore, I now live a life were I don't commit myself to any social outings, don't get involved in anyones personal life or allow them to get involved in mine, my kids and friends all now except this and you know what it works for me, my pain levels are kept at bay, I have found that if I come outside this comfort zone the excruciating pain all starts again, so this works for me and may work for other people, don't get me wrong it can be lonely at times but I'd rather be lonely than in constant excruciating pain, also the sunshine help, when I go abroad for between 1/2 months at a time my pain levels are reduced by as much as 70%, I know this is because I am swimming every day and the sun is shinning.
By Lynne, 12-Nov-2018 00:58
Good. Well done. We need more stories like this. I’m determined this will pass. My comment, however, is particularly directed to Linda, the last person to post. I spent years running around being the life and soul within many friends groups. I was terrified of giving all that up but I knew I had to. I moved to the countryside and got some chickens and a polytunnel. The silence occurs when the teenagers stay away. It’s very uncomfortable because I have no-one to buzz off and confirm that I am a good person. My deep down thoughts of how bad I am creep in. I’m having to deal with them with no medication. I’ve detoxed chemicals and toxins from my body for 4 years now. Now it’s time to detox toxic thoughts. I don’t use the word fight fibromyalgia, I use the word let in patience and self love.
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This recovery story is in categories: Fibromyalgia, Irritable Bowel Syndrome