My first forum post - Hi everyone

I’m new to the forum so I just wanted to say Hi.

A bit of background…I’ve been suffering with osteoarthritis in my spine and chronic degenerative disc disease since I was 12. I wasn’t diagnosed properly until I was 25, when I paid to go private to have an MRI. The last 2 years have been the worst so far and in December 2016, I had to stop working as I couldn’t manage any more. As I predicted, I am having an uphill struggle with the DWP but that’s another story :slight_smile:

At the beginning of this year I was diagnosed with Fibromyalgia and I have to say I am having a very hard time getting my head around it. I wasn’t surprised one bit as my Mum and best friend suffer with it too but it just feels like another nail in the coffin. I’m already struggling with this massive feeling of loss…loss of independence, loss of identity, loss of social life and friends…and this diagnosis just seemed like the thing to push me over the edge.

I also suffer with deep depression and anxiety, so what can I say, I’m just one big ball of fun :slight_smile: Anyway, hello to you all. I hope I can contribute and help others and I also hope to maybe find a friend or two or a sympathetic ear. I’ve tried to find groups near to me but there doesn’t seem to be any.

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Hi, Amy! I also was diagnosed in January and new here too. I have been doing a lot of studying about fibromyalgia and would like to recommend 2 books to you.

The first is "Fibromyalgia, An Essential Guide for the Newly Diagnosed” by Claudia Craig Marek, Which takes you day by day and is very good explanations to help us understand what is happening in our bodies. Start with this one.

The second is “Fibromyalgia & Chronic Myofascial Pain, A Survival Manual” by Devin Starlanyl and Mary Ellen Copeland. It is a lot denser and more scientific. A slower read; some days I cannot as my brain fog just cannot understand the words. But a VERY good text and lots of helpful information.

I made a binder as she suggested, and even just getting organized with that and a notebook to journal has been helpful to my state of mind. I bought 3 sets of tabs because I thought of more sections I wanted to make. I also put a calendar to track symptoms and medications, and a pencil bag for markers and pens and scissors, because I can never find them when I need them :slight_smile: and also that makes it portable for while I am sitting in waiting rooms.

I ordered both books from Amazon for about $20, I think, and about $20 at the drugstore for the binder and supplies.

The second thing I can offer has made a huge difference for me already, and may also help your osteoarthritis. :sleeping:

Thanks to my massage therapist Joann, last Thursday night I had the best sleep in over a year. She recommended a heated mattress pad, which I purchased online from Sunbeam. I will try to upload a picture for your reference. I use the Preheat function while bathing, so the bed is warm when I get in, then reset to Low.

For the first time in a year, I do not wake every hour to turn over painfully to carefully rearrange myself in the bed. Except for that one getting up to the bathroom, I sleep all night. In the morning on waking, I am not as stiff and sore as accustomed. Marvelous.

If you can manage the expense, you should seriously try it. My husband did not want it on his side, so I bought Twin size and simply laid it out on top of our regular mattress pad and underneath the bottom sheet. $49.49 with free shipping and the best money I have spent since the books.

The most important thing I have learned is that this will not kill me or damage my body, which is a huge relief.

The next most important thing I have learned is that I can do things to help myself (rest, exercise, and proper food). All these I can actually control, which is empowering when my whole body is in revolt.

But the actual sleep has been a lifesaver. I hope you are able to have a heated mattress pad, also.

I will keep you in my prayers. R.

Hi,

Thank you so much for your reply.

Unfortunately, money is an issue as I am unable to work, but if I can I will certainly look in to those books you have mentioned. I have tried to do as much research as I can online but there seems to be a lot of negativity and unknowns regarding it. If anything, it’s made me more scared and helpless.

Sleep is something I definitely struggle with. I average about 3 hours sleep a night at the moment. This, I think, is partly due to the medication wearing off after about 3-4 hours so I feel shattered most of the time. I’m not sure whether something like a heatpad would help me in bed; I get hot every easily and my back is covered in burns from where I use a hot water bottle everyday.

I think the thing I am struggling with the most is the general apathy from the so called ‘medical professionals’. No one seems to take me seriously and I feel like I am fighting this alone. I am now 34, dealt with this for 20+ years, worked my butt off since I was 17 and the one time I need help, no one is around to be seen! I’m trying to help myself as much as I can but there comes a time where I think if there’s any point in fighting anymore.

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