Am I The Only One, Symptoms & My Story

Sorry for the errors I wrote on my phone.

Hi, MizzFabuloso. Welcome.

Fibro's a tough road, no doubt about it, and you're young. But, as Sherrine said, it sounds like you have a doctor who is going through all the important tests before making a diagnosis....that's good.

I have vulvodynia too, and I know how unpleasant it is - for me, after supper is the worst time, for whatever reason.

You've landed in a good place - we understand!

Debbie

Oh my days reading your story is like I wrote it myself only my doctor said it's general wear and tear :( I haven't had any tests I'm under the gastro for my stomach I oh back Thursday to see him. The pain in my joints hurts badly hence coming here I think I have fibro I've had the blood tests for arthritis came bk clear but I don't bite it something wrong my bones are agony and due to all the pain I get terrible anxiety :( x

Pelvic muscle pain is caused by the same CNS deregulation fibro is – just a different expression. I had it severely and now it is 100% gone. Read the book; Headache in the pelvis. Your Ambien can be causing many of your symptoms – it is known for the burning as are the benzodiazepines and other GABA binding drugs.

The more you fear and become focused on the symptoms the more the CNS gets altered and the more symptoms you get and with more intensity. If you read all the latest fibroi research it say that fibro and all the associated conditions are caused by an arousal mechanism stuck on. This can be a result of a stressful childhood, maladaptive coping skills, stress, doing more than your body can easily tolerate, thoughts, beliefs and genetics.

Yes, it does sound like you have a good doctor who is ruling things out properly :) Make sure you get tested for Lyme disease too. I notice that you have IBS - IBS and fibromyalgia together can indicate an underlying cause of Celiac disease, so make sure you get tested for that as well. That said, IBS and fibromyalgia can both be caused by a malfunctioning central nervous system.

If it is fibromyalgia, then it is a problem with your central nervous system, but it doesn't show up on the standard tests.

I'll second the magnesium thing. It's the only thing that (I'm pretty sure) works for everyone with fibromyalgia. From there on out, it's figuring out your individual treatments - you can get ideas on this forum and from research, but you'll have to test things out properly and see what works for you.

The most evidence-based treatment for fibromyalgia that I know of is gentle, properly paced aerobic exercise and cognitive behavioural therapy. You should go for a walk each day, even if it's only 5 mins at first. I would suggest you also do something like water aerobics, as the water takes the pressure off your joints while exercising. Pilates is a good idea to strengthen your core, improve your posture and keep you flexible despite the temptation not to move for fear of pain. Cognitive behavioural therapy is good for depression and not letting pain stop you from doing things (within reason, you do need to pace yourself and be kind to your body, but you can't just lie down all day either or your muscles will waste away - speaking from experience here).

Meditation can help you respond to the pain in a better way. I used to get panic attacks when in a lot of pain, but since doing mindfulness meditation I haven't had a panic attack.

In summary, you could try:
•magnesium supplementation (oral powder or oil on skin)
•walk each day
•water aerobics
•cognitive behavioural therapy
•mindfulness meditation