The newest guidelines for diagnosing fibro don't include the tender point exam. So don't worry about that. And please don't worry about NOT having fibro and NOT being able to continue on the meds that are helping right now. No doc in her/his right mind would take those meds away if they are helping---no matter what the diagnosis is.

If blood tests for sed rate, lupus, and other things are negative, it probably is fibro. It is diagnosed now by symptom clusters.

I had an exam for SSDI (disability) by a doc who used a tender point exam, and that day I did not even have any tender points! I passed the test and got disability. Hope this helps. be good to yourself

Shakota...what are symptom clusters? Haven't heard about that.

Thanks

Hello, and welcome!

Doctors can use different criteria. Tender points are commonly still used by many, but the guidelines change fairly regularly.

The big thing to keep in mind is that while the docs may have ruled out everything in *their* opinion---it's okay to ask them to re-check. My doc rechecked my inflammatory markers (sed rate, ANA, CRP, etc.) every year even tho' I'm 20 years into my dx---just in case something else comes up. At first, however, it was to make sure the dx was correct. So if the doctors have done a thorough job of ruling out everything else from celiac disease (malnutrition from it can cause a lot of the same symptoms) to RA to whatever... Yeah, you're left with FM.

Also, the side effects of meds can be as much he** as the disease (trust me on this, I have epilepsy too, ugh!), so journal your symptoms. It could help the docs figure out if its FM, meds, or something else.

Sorry so long a reply. I ramble when tired.

Cheers,
Leo

Welcome to the group!

I agree with the others. Here is the an example of a symptom cluster:

Pain (includes disturbed sleep), Fatigue, Domestic (spousal relationship, impact on family), Impairment, Mood Related and Social. These are all factors that are included when making a diagnosis of Fibromyalgia (FMS) these days.

The one thing that you did not mention is a medication for sleep. this is a critical part of managing FMS. Fibromyalgia interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. You should have a sleep study done to evaluate your sleep pattern. In turn, the right medication can be prescribed to assist a more restorative sleep.

It is pretty normal for anyone being given a diagnosis of a chronic illness to have some level of denial. No one wants to be chronically ill. However, if you continue to struggle with this, I'd like to gently suggest that you consider counseling. The best type of counseling for this situation is Cognitive Behavioral Therapy. Many of us see someone for extra support. The type of counseling will give you tools to better cope with your diagnosis and daily living.

As Leo said, you can always ask for a recheck on your blood work. Make sure that your Vitamin D level is also checked. Most folks with FMS have very low Vitamin D which can cause widespread pain. If push comes to shove, you could always get your medical records together (save time and money) and get a second opinion.

And finally, I'd like to recommend a book called "Fibromyalgia for Dummies." You can find it on Amazon. This book will give you a comprehensive overview of this complex illness and a lot of ways to try and manage it. Knowledge is power.

Glad that you found us. Take care.

(Great post Fantod, as usual!)

Here's some recent info about diagnosing and treating fibro.

http://fmguidelines.ca/

Everyone that has to take pain meds for chronic pain may have them taken away. Unfortunately, that is the reality we're living in with the tighter restrictions. Anyone who thinks this couldn't happen to them is not being realistic. But, the chances of this happening are less if you're taking low doses of pain meds, you keep your weight down, stay as active as you possibley can, obey the rules of your dr and if you realize that pain meds do have prescribing limits. In other words, you can't expect to always be able to go to a stronger med when the one you're taking stops working nor can you always expect the dr to be able to increase your dosage.

Wow, what a blessing to wake up to this morning! I'm now wondering why I waited so long to join an online forum! Thanks for your response, Shakota! That helped a great deal. :)

Hi, Leo, I don't think I really have signs of anything else that hasn't been tested, though so far they've only tested for sjogrens, lupus, and MS. I do have colitis and often wonder if I'm missing nutrients they don't test for... But if that's the case, I'm not sure if there's a whole lot I can do about that. I do eat the best I can; I'm just not sure what gets digested. haha.

Thanks, Fantod, Your response made me a bit teary. You are right, this is not a diagnosis I want. Not one I understand, either.

As for sleep, I take over the counter tylenol PM. That, along with the gabenetin, usually works, though last night I was up pretty much all night with intense pain. I'm not sure why except that I went to yoga and let my pride (not wanting to look stupid) push me into doing more than I probably should. Which is another aspect of all this I'm trying to wrap my head around. I've been an athlete all my life, and have lived with the old school mentality of pushing through. I am having to learn a new way of living, and yet, the moment I start to even think along those terms I decide I don't truly have fibro and need to just get over it, or eat better, or stretch more.

Also, thank you for the suggestion regarding counseling, and for the book suggestion. I'll check that out. I did spend a great deal of time reading through the treatment thread. I'm hoping to learn of things that others have found helpful. I started taking coq10 yesterday, and recently started the paleo diet. I've been gluten free for some time now.

Thank you for the link, Shakota!

Thanks, It'sjustme. That's one thing I hate--feeling so dependent on my rheumatologist. That's a very icky feeling. But I do really like him, and he is very responsive and kind.

You all have been incredibly encouraging and assuring. Thank you so much, each of you, for taking the time to respond and share your thoughts and experiences.

Hi JenS3 - Here is a short explanation of how Fibromyalgia works.

It is a disorder of the central nervous system. The mechanism that causes it is not understood. In some people, it can be triggered by high levels of stress, an accident, surgery, childbirth, physical or emotional trauma. There is also a genetic component. Only certain classes of prescribed medications are effective for the type of pain caused by FMS. OTC medication such as Aleve etc. is usually not effective for this type of pain. FMS is recognized by the Centers for Disease Control, the National Arthritis Foundation and the World Health Organization to name a few.

Tylenol PM is probably OK but long term use may have consequences for your liver and stomach. It is not going to address the pain issues associated with FMS as indicated in the previous paragraph. I'd really encourage you to get a sleep study done. Restorative sleep is really important when trying to manage this syndrome. We are all sleep deprived to some degree or another. Not only does it affect our pain levels but it can impact cognitive function too.

Pacing is crucial when learning to live with this complex illness. Its a hard lesson to learn but when you do it makes things so much easier. Respect your limits because the paybacks are usually h*ll.

If you have any questions, need to vent or want to join Leo's very informative and funny morning check in - have at it. You are not alone. Take care.

Thanks, Fandtod. I'll ask my rheumy about that. :) And I'll definitely have to find that morning check-n. I could use some humor! :) (I have a slight obsession with smiley faces, as you may be beginning to notice.)

It's a really essential thing to have a caring doc. You need someone who you feel is always on your side. Even with the current anti-opiate campaign (to save lives), I hope that good sense will prevail. As in: if something helps you and you don't abuse it, keep doing it.

What I take: pain: methadone (5mg or less per day) with baclofen.
sleep: trazodone 25 mg every single night.
bad flare or bad sleep: clonazepam (0.25 mg).

Hot baths, bengay, walking only or maybe some limited jogging, no weights upper arms, no carrying anything least bit heavy.

Distraction from pain via DVD movies, internet, anything.

Avoid: any overdoing that results in fatigue (which translates to pain).

take care.

Thanks, Shakota,

I do really like my rheumy. He is very responsive and caring.

I have tried epsom salt baths a few times. I'd be interested in knowing if anyone found those to work. I am not sure if I noticed a positive difference, other than they make me feel sleepy, which maybe helps.

Don't know about how much magnesium is absorbed through the skin in a hot bath, but a well-known fibro rheumy-researches, Dr. Robert Bennett said that one of the best remedies for pain is to take a pain med, take a hot bath and take a nap. Invariably, one feels a lot better upon waking.

A lot of the time, I can't take a hot bath in the am because it tires me out too much!

Throwing in again, JenS, to say that yes, Fibro for Dummies is a great book---and get a copy for your loved ones to borrow, or Xerox important pages for them.

I had a chronic dx long before my FM (silly epilepsy hit me when I was in college), and I had already worked out the process of denial-etc., but it's a very valid response. Counseling can help, as can online groups (yay DS!). Best thing I've found is to just go ahead and feel miserable for a while.

If you have a hubby/kids, or other family in your home? GREAT way to let them know your pain and mood level is the Green-Yellow-Red I think I may have actualy invented.... I get Green construction paper, Yellow paper, Red paper. I taped them to the fridge, and whichever color has the arrow shaped magnet on it? That's where I'm at. Green is Good Day; Yellow is Approach with Caution; Red is I feel rotten and am not going to tolerate anything up to and including "Hey, honey, what's for supper"....

It's a very simple visible way for the rest of the household to know where I'm at. It changes during the day, sometimes, but it's just easy. Hubby looks, sees where I'm at, poof, done.

You can ask your doctors to screen you for nutrition issues. We're all unique in what we require for optimum performance, but it's surprising what can show up. B12, D3, iron, electrolytes (calcium, magnesium, sodium, potassium) and so on are basics. And how you receive nutrients is huge. Some people do best changing diet, others are okay with supplements (tho' please get good ones---cheap ones don't absorb worth a darn in *healthy* people!)--- even liquid form (juicing, pureeing, or stuff like Pedialyte or Ensure).

Soryr to ramble on so long:-)

Why does every response make me cry? I feel like if I stopped to think about having fibro, I'd get so sad and never bounce back.

I'm going to go cry for a while. Thank you all for taking the time to respond and share your experiences with me.