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I'm freaking out
2 Replies
Skyler - March 4


My name is Skyler (or just Sky). I'm just being diagnosed with FMS. It explains everything thats happened to me over the past 2 years, but I'm kinda freaking out about it. I am a father and a husband, my wife is a wonderful and supportive woman. She does what she can, but I needed to speak to some people who have lived with this.

Every morning, I wake up and my head feels like someone is digging their way out of it. My back, my legs and my arms feel like they're about to fall off. How do you guys go on like this? It's starting to effect my school work, my ability to play with my son, my music, everything. What do I do?


Fantod - March 4

Hi Sky and welcome to the board!

A diagnosis of Fibromyalgia (FMS) is certainly upsetting and we have all been in your shoes. It is rare in men; the percentage is about 20% as opposed to us lucky women.

I think that understanding more about this syndrome may be benefical to you. FMS is a disorder of the central nervous system that causes widespread, chronic pain. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. OTC remedies like Tylenol and Alleve are not effective for the type of pain associated with FMS.

FMS is recognised by the Centers for Disease Control, The World Health Organization and the National Arthitis Foundation.

There are now three medications used to treat FMS. They are Lyrica, Cymbalta and Savella. You have probably seen the ads on TV for Lyrica. Cymbalata addresses both the pain and depression that usually accompanies FMS. Savella has been used in Europe for decades and was approved for use here in 2009. Your post does not mention whether you have started on any medication or not. If you would be willing to share that information, we could offer some more insight. A key point to remember is that the longer a chronic pain cycle continues, the harder it become to manage or stop. Once you start medication it could take a month or more before you notice any change. Typically it takes time and tinkering to find the the combination for each person with FMS. There is no set treatment protocol as all our symptoms vary.

You are tired and sore due to a lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to heal themselves from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. You should be on a sleep aid like Amitriptyline for this issue. This is a crucial part of treatment.

With regards to diet, there are some things that you should avoid. Deep fried foods, lunchmeat and red wine (nitrates) may increase your pain level. If you use an artifical sweetner including Splenda - get rid of it. Replace the sweetner with something made from the nontoxic Stevia plant like Sun Crystals or Truvia. You can find the latter in the baking aisle of the grocery store. Most people with FMS also have chemical sensitivities to some degree or another. The items that I have mentioned are at the top of the list for people with FMS to avoid. No sense in adding to an already uncomfortable situation.

I'd like to recommend that you pop onto Amazon and order "Fibromyalgia for Dummies." It has good basic information which you should read and then pass along to family and friends. Knowledge with action is power.

It is still a battle to find knowledgable, fibro-friendly doctors. You can go to the National Fibromyalgia Association website and see a listing for your state. Or, check with your local hospital website or call the physician referral service and have them match you up with a rheumotologist and/or a pain specialist with and interest in FMS. You will have to learn to be your own best advocate when it comes to getting decent care for this health issue.

There is no easy answer about how to live with FMS. Everyone goes through a grieving process as they come to terms with having a chronic illness. I'd like to gently suggest that you consider seeing a counseler who uses Cognitive Behaivoral Therapy. That would give you the added support and some tools that you need to work through this situation. All of us have had to relearn our lives and how to live them now. Pushing the envelope will only set you back further. Learning to say "no" and respecting your limits is very important. As for school, you can ask for accomodation. If you need extra time to complete assignments due to chronic fatigue etc the school should be willing to work with you. Incidentally, while it is understandable, freaking out is not going to help. Stress of any kind is not our friend. It makes FMS symptoms much worse. Try to accept what you can not change to make life more liveable.

If you are interested, take a look under the "General Discussion" heading for information about Skype. Noca/Keith is our spokesmodel and fearless leader for this enterprise. If you have a computer with a microphone, you are all set. Skype calls are free between users anywhere in the world. It takes about 20 seconds to download the program. Find Noca on Skype and you'll find the rest of the mob.

Sky - you've come to the right place for support and information. You are not alone with this vile syndrome. We'll help where we can and if you just need to vent - have at it. Take a look at the blue boxes on the lefthand side of this page. Lots of good information there too. Take care, try ot enjoy the weekend and keep in touch.


January - March 4

Hello Sky. Sorry you're a new member of The Club. We ARE kind of interesting, sensitive and compassionate people though! Fantod is a wealth of great information, as are many others here. I can come on here and whine a little, and somebody else always understands! I'm learning a lot! We all have our own unique problems and approaches. Fibro is different in everyone, so listen to your own body and start keeping a journal - note down what your symptoms are, and what you are taking or doing to treat them. Very helpful in dealing with doctors to have a journal.

I wanted to add my POV!

I didn't do well with the usual Fibro drugs and can't tolerate most meds at this point. I take some low dose older meds - some for sleep, some for pain. If I could smoke marijuana for sleep and pain, I would. My approach has been to do a lot of research and take nutritional supplements for energy, pain, etc. I had bad experiences with doctors and "treatments" that left me worse than I was, so I carefully check up on side effects and interactions of any medication I take and I don't just believe what some doctor tells me. I ask questions. Fibro is the "hot" disease right now, and there are a lot of so-called cures that are a waste.

You have to find a doctor who will take the time to listen to your specific complaints and work with you. I'm annoyed with the cookbook approach of just handing out Lyrica or Cymbalta if someone's in pain. You might want to ask for more diagnostic tests - get a sitting MRI to see if you have herniated disks in your back, for example. Figure out if it's nerve pain or muscle pain or what.

I won't take the newer drugs with the severe side effects; e.g., Cymbalta can put people into diabetes or cause severe liver problems. But it helps some people too. Educating yourself is key. And if you take the drugs, get the proper blood tests to check your body systems.

Somebody might offer you cortisone shots; research shows they don't work in the long run, and make the pain worse. (Article in Wall Street Journal)

If you have stomach pain, somebody will offer to put you on PPI drugs - be aware that those drugs can cause osteoporosis and they are very hard to get off. The same with many of the antidepressants. Once you start, it's very hard to stop them - withdrawal can last a lot longer than the 2-4 weeks they tell you, and it isn't pleasant. Just be aware of what you are getting into.

A lot of us have severe food allergies, so while you're eating a "normal" diet, you might want to ask for blood tests or skin tests to rule out allergies. I had good results with a strict gluten free diet - helped my fibro pain and my depression, but it took over a year for me to notice - and you have to be really strict about it. Gluten is hidden in many places. Try to eat organic. Take multi vitamins and minerals. I take a lot of Vitamin D and I think that has helped many things.

Acupuncture was very helpful in alleviating some of my pain, and also my extreme fatigue at the beginning of this journey. Lidocaine injections into my knotted up cramped muscles, along with massage permanently helped that problem.

Anyway, this site is a treasure trove of various experiences and ideas. Page through some of the old postings, there's so much to learn.

Glad you have a supportive spouse, and glad you got diagnosed earlier rather than later! Feel better.



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