Finally being heard!

I was just diagnosed with fibromyalgia and chronic fatigue syndrome about a year ago. But I have been living with constant pain and fatigue for most than 10 years. When I look back and I mean truly look back the first real indication something was not right that I can remember was in my early 20’s. I am in my mid 40’s now. So if I am being honest, I have been screaming someone help me, someone tell me I am not crazy, someone please tell me I am not alone for more than  years. But someone did finally hear me. I have a champion in my family doctor. He said something gas to be done and if this doctor won’t help you and won’t listen I’ll send you to another and another until one does.

So I am here to tell you that your battle may be as long as mine, longer or God willing shorter, but do not stop fighting and screaming and begging to be heard. If you have pain, fatigue, trouble sleep, trouble staying warm or cool or both, heartburn, GERD, frequent headaches, IBS, crazy periods and PMS and cramps, stiffness (and no it is not just in the morning), depression, mood swings, trouble falling asleep, trouble staying asleep, trouble sleeping period….I could go on and on because the symptoms are endless. My point is make sure you are heard and if the doctor you are seeing will not listen find someone who will.

And no I am not well. Each day is a new struggle, but I am working on it. And for now my Rheumatologist seems to be listening. My family doctor is impatient though and is almost ready to send me to someone else. He wants to see better results or more than just prescribing me something for the pain and something to help me sleep and giving me the horrible advice of ‘If you would lose some weight…’ If I could do more than 2 repetitions of any one exercise without feeling like I was breaking something vital off I would not be having my weight issues. If I could walk more than 10 minutes straight without feeling like I was just run over by a Mack truck I would not be looking at the doctor like he just lost his mind.

Please just don’t give up, keep notes, write down how you feel each day and what you did in case there is a trigger. Keep a log of what you eat, there could be something you find that makes you feel worse. I know I did, if I eat too many starchy foods like potatoes, pasta, corn I have more pain. Always wear layers in the winter and carry a light weight jacket in the summer if you have temperature sensitivities like I have. I even have a space heater in my office that does run during the hottest days of summer. The reason is that my desk sits directly under a air vent (and not there is nowhere to move it, I have a small office and 2 vents), the air vent above me is closed, but the air still comes down on me. In the mornings I freeze and then I hurt, so the heater gets turned on. In the winter it is usually the opposite, I burn up, so I wear layers and the bottom one is usually short sleeved.

I wish I could keep going. I have so much more I want to say. But working on my blog tonight has cost me my last spoon of the day. So I am done for the night.

My final thought or word of advice is do not give up, you are not alone. There are a ton of people who have been in your shoes and will happily give you support. Just search for them on Facebook and google. And if  anyone reads this post who has a loved one with pain and fatigue. Please do not tell them what they should eat, to exercise more or any other well meaning thing. Just offer to be their rock and to help them on days they feel they cannot take 1 more step. And whatever you do never, ever use the phrase ‘we all have pain or we all get tired’. Trust me what they feel is not just tired and it is not just pain.

God Bless!

 

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