Sharing the experience!

Being only 25 and suffering with Fibromyalgia for the last 4 years sometimes i feel my life has been cut short. I used to love going out drinking with friends and going to gigs and rock festivals. I lost count of how many times iv had to sleep at train stations in the cold after missing the last train home, or waking up with an awesome hangover and opening a beer to cure it! Life was fun, but after Reading festival 2008, after spending the weekend camping, sleeping in my wellies and brushing my teeth with beer i returned home and crashed. I never recovered. I lost my job (despite being a party girl i had a well paid career and was working with a top 5 FTSE company). I couldn't drink alcohol let alone go out and party. Slowly but surely my "friends" disappeared because they got bored of hearing "sorry i dont feel well". No one knew what was wrong. I started to believe it was in my head and even my doctors led me to believe it was. The pain was one thing but the fatigue was a whole different story. I have always had problems with sleeping due to having an anxiety disorder from childhood. Now sleeping was rare but it was all i felt like doing. I would drive my partner mad, twitching, restless and eventually just getting out of bed, he couldn't understand because no one could explain what was wrong. Last year i was finally diagnosed by a pain physician. Finally i could take action. I still wasn't working but my partner paid for me to try anything and everything and that is what i truly want to share with all of you in the hopes that it may help you too.

Of course my doctor put me on lots of different medications, most of which made no difference, some of which maybe just took the edge off but all in all i really felt no better. My pain physician recommended a chiropractor, not cheap but i was game. After the first session i felt like racing my other half back to the car. I bent down to pick up my bottle of water i had dropped and it didn't take me half an hour to get back up right. I felt pretty good! After several sessions i returned to see my pain physician and she couldn't believe how much movement i had in my legs, she said she had never seen anyone with FM have that range of motion.

With the combined pain relief of Chiro and co-codamol the pain was manageable and adding a deep tissue massage every few weeks into the mix i feel a lot better. I wont lie and tell you i have no pain or stiffness because i do. I still have flare ups but they are easier to manage. I rarely cry out in pain any more and morning stiffness is generally a thing of the past, however the fatigue....oh god the fatigue was still destroying my life!

It was time to tackle the fatigue, the ruler of my life. He was an abusive partner who dictated where i would go and what time i would be home and who i could see. He was a constant reminder that i was weak, and he was forever reminding me that he was strong and fully in control! He had to go!

I had begun studying science, in particular medicine and and disease. FM had cost me my job and current livelihood but it would not ruin my future. With a better understand of the human body and how to make it work properly i began my life as a human guinea pig. I realised that what i truly needed was a good night sleep and to make this happen i needed help. I found that taking 3mg of melatonin at night helps me to fall asleep quicker and allows for more rest. Melatonin is a hormone which the brain only releases at night. It helps regulate other hormones and maintains the body's circadian rhythm which dictates when we sleep and when we wake up. It helps with a number of different bodily functions but it only does so when we sleep. I take before i sleep with amitriptyline and i am now finding i sleep through the night 80% of the time.

Now as i am sure you are all aware, FM sufferers will generally have a magnesium deficiency. This is probably caused by the lack of sleep and therefore needs to be replaced. Magnesium will help relive pain, fatigue and also improve cognitive function so its pretty important for us. I started taking 300mg a day of magnesium citrate and also 1800mg of malic acid. Malic acid is important in the production of cell growth. I am sure you have all done a lot of research into FM (probably know a lot more about it than your GP does!) and studies have shown that people with FM have a low count of mitochondria (or energy cells) within their tissues. Malic acid helps the production of mitochondria and magnesium allows the malic acid to be deployed where it is needed. Studies have shown the combination helps improve pain and fatigue in fibromyalgia sufferers. It is impossible to find in your local health stores but can be found on a number of on line health shops. Its not cheap in pill or powder form but i find is well worth the money. In its natural form it can be found in the highest concentrate in apples, so i also try an eat a few apples a day. For wine drinkers you will be happy to know that too has a high concentration of malic acid, but sadly i am not sure how effective that would be!

I then began Bowen therapy. I had 4 sessions initially and the side effects were pretty awful but after my second session i knew this was working for me. I spent an entire day on my feet, walking, shopping, dining and the next day expecting a pay back flare up (usually 3 days bed bound) i felt great. Like the day before had never happened.Bowen therapy is designed to help pain as well as fatigue and is often recommended for those with FM and ME. Its a gentle massage like therapy which helps to the body to send blood to the affected areas, which of course sends oxygen which replenishes and repairs cells at a faster rate. A Bowen therapist will generally give you a very wishy washy explanation but biologically this it what i have figured it does. It really doesn't feel like they are doing anything to you, its so gentle which is great for a FM sufferer because usually when someone touches me i want to punch them!

With a little wind now under my sails i was starting to leave the house more and more. Before the pay back would have been a female dog, a day walking would mean at least 3 days in bed but the following day i was up and about again.

Now i take my malic acid, magnesium and melatonin daily. In the month i have a Chiro session, a Bowen session and a deep tissue massage. I wont lie and say i feel like i used to, i accept that i probably never will again but having the ability to routinely go out, get to college, see my family and friends and end the day with a fairly good night sleep has changed my life and now i am looking forward to taking a holiday (seemed pointless before to spend all that money to lay in a hotel bed all day) start university in the autumn and just have a life again. It is possible you just have to find what works for you. I hope my experience can help you all too, but please if you do want to try anything i have talked about, speak to your doctor first as everything can have unwelcome side effects, even the natural stuff. Best of luck to all of you.

Zoe. xxx

5 Replies

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  • Wow that certainly was alot to take in but very interesting too. i am glad that you are ffeeling so much more positive about things and all your combinations of treatments and tablets etc work for you, it is funny how we all have to muddle through blindly and trial and error as to which medicine be it natural therapy or Doctor prescribed to get to a point where we feel our lives are pretty much ok. you take care and love to you Diddle x

  • Hi Zoe,

    What an intresting read, I am so pleased for you that you have found a mix of things that help you. :)

    I would try anything, but i dont not have any extra funds to try these things right now.

    My partner keeps me and three children and the money we have just wont spare anything. I cant even get dla.

    Thankyou for the advice and maybe in the future i could give these a try, hope so. :)

    kel xxxx

  • Wow! I'm glad you're feeling much better, it is trial and error and an ongoing thing to sort this horrible illness out, but at least we know talking to people on here can help.

    Hugs! xx

  • thank you, a intresting and thought provoking read. Glad ur back on track now lou x

  • Lucky for me i found a lady in my area who offers different types of massage and Bowen therapy. She is reasonably priced and gives me a great discount because i always book multiple appointments. For example she charges £30 for an hours Bowen but knocks a tenner off each appointment because i book in bulk. Its good to look around because there are a lot of private therapists who will offer good deals. I found her using gotosee.co.uk you can search by your area for alternative therapists. As for chiro it is possible to get it via the NHS, you have to wait a while but it is worth a try if you cant afford to see one privately. I couldnt afford this on my own, i do rely on my partner to pay, i still dont work as i study 5 days a week and i do need my weekend to recuperate so i can appreciate how hard this can be. As for my supplements i do shop around and buying in bulk makes it cheaper, but obviously when you first try its not worth buying in bulk in case they don't work for you. Again, it is worth talking to your doctor to see what you can get on prescription. If you do have the magnesium deficiency (more than likely) you can get magnesium via prescription. You can get many supplements via prescription if you can prove that they work for you and are positively contributing to your illness, including malic acid. Once i have proved to my doctor for 6 months that it is having a positive affect on my life he said he will be able to prescribe it to me. There are ways to save money and get what you need you just have to look. xxx

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