Arishthis Website

by Lynn Griffiths, 54 years old

In hindsight I know I’d had the symptoms of fibromyalgia lurking in the background since I was a teenager. Fibromyalgia symptoms can come and go with long periods in-between. This is what made it so hard for the hundreds of doctors I have seen, to make a diagnosis.

A typical scenario for me would be that every night I would fight with my body to sleep. I would put in my mouth guard to help my muscular TMJ problems and then try and relax through restless leg syndrome! I would wake up some mornings crying with the pain in my arms, shoulders and neck and hobble like my 100 year old grandmother did, to get to the bathroom. Mornings are the hardest for me and always have been. Three hours later I could be having a good day and be at work with no problems. Or I could be having a bad day and really struggle to function!

I was not diagnosed until just over a year ago in October 2010. I was in a ‘Fibro Crisis’ and in so much pain all over that I just could not work anymore. My symptoms could no longer be ignored or hidden and I was in an all time low! I had been a Dental Hygienist for 30 years and loved my job. During the last few years though, I had to cut my days to just twice a week due to my undiagnosed health problems. One day I was there, the next I was medically retired to the surprise of my work colleagues. I had tried to hide from them how sick I actually had progressively got.

The debilitating fatigue, lack of sleep night after night, IBS with crippling diahorrea, widespread muscle pain, cognitive problems and what is known as ‘Fibro Fog’ along with a tirade of other symptoms all contributed to having to give up my dental career!

About three weeks after leaving work I was referred by my skin specialist of all people (he recognized I was very ill) to see a Professor of Rheumatology at a Sydney hospital for an emergency appointment. I was diagnosed within five minutes as having fibromyalgia syndrome (FMS). I was sent for all the usual barrage of tests to eliminate everything else, even though a diagnosis was so typical of fibromyalgia. The relief of having a name for all my silent intermittent suffering over the last 36 years was enormous!

I entered my forced retirement 13 months ago feeling a lot of resentment that I’d lost my life. There is no cure for fibromyalgia. It was very hard for me not to resent all of the medical profession for making me feel like a hypochondriac! After all this was the third Rheumatologist I had seen in the last six years!

I had the uphill struggle to try and explain to my family and friends what fibromyalgia is. I have lost friends because I was sick and unreliable from having to keep cancelling engagements. I was the same old person underneath but my body just couldn’t keep up! I understand how very confusing to someone else it can be to see me looking so normal and well with this hidden, truly at times, debilitating syndrome! I find it hard to plan one hour in advance, let alone a week or two. Just because I stood up and made dinner yesterday does not mean I could do it today! It is this aspect that makes it hard for other people to understand.

Straight after my diagnosis I started the trials and tribulations of trying out different medications to help me function. I am talking about just getting out of bed! It is here that I want to mention my local GP, who accepted me as a new patient and has really helped me so much over this last year. He believes fibromyalgia is real and was treating other patients with fibromyalgia as well. He worked with me and I with him with a very open mind to find a way to best manage my road to be able to function again.

The many symptoms I was experiencing during those early months after diagnosis were horrendous. I am very lucky to have a very patient understanding husband who came to every doctor’s appointment with me. I could not have done it alone, as I didn’t trust myself driving a car then or even filling out a simple form. My memory and concentration was awful!

I was put on an antidepressant, which I hated to have to take but apparently lots of Fibromites have to take this to keep things settled. Over the next six or so months, I tried Cymbalta (Duloxetine), which had side effects like drowsiness, diahorrea, dry eyes and mouth, sleep disturbances and weight gain. It made me so ill when I reached the recommended dose I had to stop! I then tried Lyrica (Pregabalin), which in addition to the last set of side effects; I could throw into the mix awful brain fog. I persevered with Lyrica for quite a few months along with Norspan pain patches. I also tried some Melatonin every now and again to help with the sleeping. They were a great help when I got desperate for a good night’s sleep but did make me groggy into the next morning!

I had only a little bit of relief from the overall pain in my neck, shoulders and arms, these being my main areas of concern to me. I hated the side effects and how the drugs made me feel like a zombie. I do realise though that the medication helped me through the extended flare up that I was in during those early days. You speak with any fibro sufferer and their experiences with medications could be totally different.

Over the last few months I have weaned myself off all prescription drugs and medications. I felt I was still in pain while taking them and the side effects were sometimes worse than the fibromyalgia, so I stopped. The amazing thing is that I actually have felt better since being off them, for the moment anyway, and will take a lot to get me to go back on them! Another weird thing is that all my IBS symptoms have gone away. I am not complaining about that! My doctor was very instrumental in steering me towards alternative medical therapies.

I attended the local hydrotherapy sessions run by Arthritis NSW. These were good and the retired physiotherapists running them were very willing to learn about the best way for the hydro sessions to benefit those with fibromyalgia. We are very able to do whatever is asked of us in the way of exercises, but it is later that we may realise we have over done it! I learnt that lesson after the first couple of sessions that I just had to go slowly and very easy whether I liked it or not, if I didn’t want to spend the next day in bed!

I tried a series of sessions with an osteopath, who had really helped some of my fellow Fibromites, but unfortunately my muscles could not tolerate it and the treatment threw me into a flare up! If I tried osteopathy again, the outcome may be totally different. My doctor has given me a few sessions of acupuncture, which, although the benefits short lived, proved excellent!

I couldn’t have got through this past year without my new fibromyalgia internet friends all over the world. There are some great sites out there (see at the end for my list).

Another great thing to have happened is that two ladies in our local Fibromyalgia Support Group here in the Southern Highlands, decided to start up a monthly group meeting in February 2011. We were amazed when nineteen people turned up! There are now 27 on our membership list. We know there are lots more people out there that don’t make it to the meetings because of their symptoms making it impossible. We are just so grateful for Arthritis NSW being there with all its support and providing us with a great venue to hold our meetings. We are in the process of notifying the local doctors that our group exists and are delighted that already some of the GPs have referred undiagnosed people to our group to see if what they are experiencing match what we all talk about.

For me, an important turning point in having non-curable fibromyalgia was the acceptance that this is my life and I have to make the best of it! I was once told by an insensitive family member to ‘get over myself’ and I am really trying to do that! It does help for those closest to me, to understand, what fibromyalgia is though. I have to let them know I am having a particularly hard day, and not expect them to be mind readers.

I have an open mind and am willing to try anything to help with the myriad of symptoms that affect my daily life. I have recently loaded my freezer with lovely healthy dinners from the Tender Loving Cuisine Company, which I discovered in the last Arthritis Matters magazine. What a great idea for those times I just have not the energy by the end of the day to cook.

I have recently started the Guaifenesin Protocol, which has helped thousand of sufferers all over the world get their lives back. There is as yet no cure for fibromyalgia but this protocol has helped many people. I found out about it through a lady living locally who came to talk to our support group about how it has helped her go from bed ridden to virtually back to normal while still having FMS. It is very early days for me as I am only in the first month of taking Guaifenesin (non-prescription medication) so have not found my clearing dose yet. I am following the protocol precisely as it can fail, and block, if I have topical salicylates touch my skin. I have just changed a few of my products that don’t contain salicylates like my makeup, shampoo and all my creams. I can eat salicylates as they are processed by the body in a different way and will not block. So, I am in no hurry as this is no quick fix and having had FMS symptoms all my life, I am being patient and following doctors’ instructions to give it a fair go.

I allow myself to rest if I need to without feeling guilty and love my occasional pajama days! If I am in a flare up and ill, I remind myself that the flare will pass and good hours or days will come again. I will never get used to missing out on social events or days out but that is just tough and I have had to come to terms with that! It has been particularly hard for my husband Noel, who has to do some things on his own, especially if an early morning is required, as I am so slow to get out of the house now. Noel will say to me “Can we do this, that or the other?” and I’ll reply “I can do this…but that, or the other will have to wait for another day!”

I am enjoying my new life doing things I never had time to do before. We are in the process of designing and about to build our retirement home. We have had our first grandchild this year and I have him one day a week. I also love gardening and get out whenever I can. And now the summer is here I will get my Hobie Kayak out into the water!

I spent a lifetime of trying to ignore my symptoms, but now keep a symptom and exercise journal and can see activities I couldn’t do last year, which I can now do. It helps encourage me to get the right amount of sleep I need and I have fun seeing how I can be a human barometer as many Fibromites can tell when it’s going to rain by their symptoms!

There is some really excellent research being done out there, albeit a bit slow, and I hope in my lifetime they will find a cause and a cure. Thanks for allowing me to share my story!

My email if anyone wishes to write to me is lynngriffo@hotmail.com

Websites

Fibromyalgia Network: Excellent site for information. Also produce a quarterly journal for patients, their families, and physicians

The Fibromyalgia Treatment Center: Guaifenesin Protocol

But You Don’t Look Sick: Support, education, and inspiration for anyone living with and invisible illness

Fibro TV: Great positive site to help Fibromyalgia sufferers. Also has a monthly WebTV show and podcasts

Fly Lady: Brilliant web site to help anyone who is feeling overwhelmed with life and don’t know where to start to set up routines, get rid of clutter and put your home and life in order. A really great web site for anyone!