[sara.boyd]

I have been seeking a focus group for Central Sensitivity Syndrome (CSS) for quite some time and although CSS has many simularities to other conditions on this chat forum, it would be even more helpful if I could chat with someone who is going through the exact or close to the same issues as I am.

[Sybbie]

It's my understanding that Central Sensitization Syndrome is an umbrella term for conditions that involve central sensitization such as Chronic Fatigue Syndrome and Fybromyalgia but it can also involve other chronic pain conditions like migraine and IBS. Or all the above. Many members of my family have CSS related health issues. For me it's multiple chemical sensitivity, migraines, IBS and GERD. How does it affect you?

[sara.boyd]

Hi Sybbie, and thank you for your reply to my question. You are correct CSS is an umbrella term for many nerve related conditions, and from what I was told, the reason these conditions manifest themselves is due to CSS being a hyperactive, hypersensitive central nervous condition. I have read that it is a genetic condition that sometimes lies dormant until something causes it to be active. No one in my family has any of my conditions, so I am hoping it is not genetic for me, I would hate for my two daughters to get even one of my conditions. I am so sorry to hear that you have chemical sensitivity, along with migraines, IBS and GERD. Those are all difficult conditions which most individuals can't cope with even one. I would love to discuss with you how you deal with everything that comes along with your conditions. To answer your question I have been diagnosed with Raynaud's phenomenon, Endometriosis, Fibromyalgia, IBS, cognitive thinking and memory issues, TMJ disorder, keratitis, chronic fatigue, migraines and an edema issue that hasn't been diagnosed yet. Thank you again for your reply, it is good to speak with someone who is affected with similar conditions. I hope to speak with you again soon.

Originally Posted by Sybbie

It's my understanding that Central Sensitization Syndrome is an umbrella term for conditions that involve central sensitization such as Chronic Fatigue Syndrome and Fybromyalgia but it can also involve other chronic pain conditions like migraine and IBS. Or all the above. Many members of my family have CSS related health issues. For me it's multiple chemical sensitivity, migraines, IBS and GERD. How does it affect you?

[Sybbie]

Hi Sara:
We're a family with sensitivies. Starting with my grandmother who had lots of allergies, hives to foods etc..., aunts, cousins - the whole family had hay fever and different food allergies. My mom had bad allergies too, and my dad had Crohns.I was the first one to start having sensitivities when I was really young. But of course, no one realized what it was until I started to out some things on my own as a young adult. When I had kids, a lot of my allergies got better, but the sensitivities got worse. My son was the first one to show the signs of food sensitivities. He also had lots of fatigue and brain fog with it. We went to a clinic for electrodermal testing and followed the restrictions that they suggested, although I'm not sold on it - I think most people would feel better if they cut out sugar, wheat, caffeine etc.... My daughter who is 8 years younger started to show signs of lactose intolerance and when she hit puberty she developed really bad food sensitivities, IBS, migraines and candida. She was missing 50% of the school week. Just lied around with fatigue and headaches all the time and I was trying to be a good Mummy giving her comfort food which was turning out to be poisoning her! I took her to various doctors but because I was recently divorced, they all blamed it on that, not just a coincidence of timing, which I knew was the case. Finally someone told me about a doctor in Ottawa who took her complaints seriously. I took her there and he did some testing, recommended a diet and medication for candida and she started to feel better, go to school regularly and although she still struggles when she cheats, she's a highly functioning graduate student! The IBS, GERD, even migraines aren't as bad when I stay away from the offending foods. When I decide to have that piece of chocolate cake for dessert, I still have the advil ready for the headache I'll get during the night. If I have a glass of wine I'm okay, but if I have a piece of bread at the same meal the IBS kicks in and within minutes I look 8 months pregnant. But to me, it's a matter of choice, and the reaction are painful consequences of bad choices. At least my IBS is a constant reminder to stay away from sugar and wheat which actually isn't such a bad thing, my BMI is 20.8!