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Do I have FMS?
15 Replies
chasmodai - June 21

For the past 3 months I have been hitting this forum and others, trying to figure out what is wrong with me. Maybe you guys can help.

About 7 years ago I noticed a tight muscular knot, about the size of a quarter, on the right side of my spine, under the shoulder blade. It ached and ached. I would rub at it with my fingers as best as I could, or try to rub it in the corner of a door jamb. I didn't think too much about it, I thought I was just working too hard. The knot would be there for a few months, go away for a while, and then just reappear.

Several years ago I noticed a similar pain in my neck. I thought I might just be tense. I would rub it and rub it and it would feel better for a few minutes and then come right back. Again, it would go away for no apparent reason, and then a few weeks later it would come back.

About 5 months ago I developed a muscular knot on the left side of my spine, in the same place the original one was, but on the other side. Same size, same burning feeling.

This time however, the pain seemed to radiate up my shoulder and across my back. In the course of trying to rub it out I noticed that I had more knots, approximately midway down my shoulder blade, in both shoulders and on both sides of my upper arms. I can actually feel these knots. They are all about the size of a quarter.

When the pain began to cover not just the knot but my entire shoulder, I made an appt. with a doctor. In the three weeks waiting to see her this pain became unbearable.

I could not get comfortable enough to sleep some nights. My husband's hands have gotten stronger from giving me massages, which helped during the time he was doing it, but as soon as he stopped, it was back. Asprin, Ibuprofin, none of it helps.

I would stretch it out, or do yoga, which actually helps a little bit, enough to get me to work in the morning.

I started thinking about what it could be and started doing some research. I started with my mom. She has FMS and our family has a history of arachnoiditis, which is an inflammation of the mylin sheathing that surrounds the nerves branching off of the spine.

I asked her about the knots and she said she wasn't sure if it was the FMS or the arachnoiditis. Doing more research, I found that my symptoms were more like FMS than arachnoiditis, so I started trying to treat myself.

I cut way back on sugar and found that it helped. I also cut back on processed foods and that seems to be helping too. I found a book that focuses on a diet for treating MS and that seems to help too. As does heat.

I also smoked some pot, which my mom suggested, and while it didn't kill the pain, it loosened up my muscles enough for me to do a work out tape, which made me feel great. I slept so good that night, if it weren't illegal and I didn't have a professional job, I would be all over it. *I don't live in a medical marijuana state*

In those weeks leading up to my doctors appointment the pain in my left should got so bad that I couldn't use it. It hurt, unrelentingly.

I saw the doctor. I told her everything I just told yall. She took my blood, got x-rays, gave me a prescription for elavil, mobic, and robaxin. The first 3 days were great. No pain. I slept. I slept too good. I couldn't get up in the morning. I became super fatigued. 7 days in I became lightheaded and dizzy. I had to leave work. I called the doc, she said stop taking the meds. I did. 2 days later the pain is back, with a vengence.

It is now radiating down my left arm and down the backs of both of my legs.

It hurt so bad last night I could not sleep, so by process of elimination I discarded the elavil because I am not depressed. It doesn't feel like a joint issue either so I'm not taking the mobic. I took the Robaxin just to see if it would help and it did. I was able to fall asleep last night but the pain is back again.

Ideas? The doc mentioned giving me an MRI next go around. Oh, the blood work came back, no thyroid issues, no cancer, everything is 'normal'. So were the x-rays.



Noca - June 21

You can start the treatment for FMS regardless if you have the diagnosis or not. The regular meds are Cymbalta, Savella, Lyrica or Gabapentin. Try seeing if those help in the meantime of getting diagnosed. Rheumotologists are usually the best kind of doctor to diagnose and treat FMS, though I just have a pain clinic doctor to treat mine.


rycer - June 21

I am saying this with all due respect for the peeps who have FMS and their pain - I just dont see why people take perscription drugs - you go to the Dr. and they dont have any answer for your pain, there is no cancer thats causing it, etc. So Dr. chalk it up to FMS. So, then he gives you prescription drugs to mask the pain. Has anyone thought about taking things naturally? There are time remedied herbs and fruits and vegetables that heal the body. Oh by the way, your body is telling you something is going on, you just dont have chronic pain for no reason - its your detective job to find the answer AND that doesnt always include going to a clinical doctor. Ive been there done that. I'll give a great example: I went thru a period of almost 2 years with a Red Ear Syndrome where my ears would turn red hot at night mainly, and every night. I soon discovered that Sodium retention was my answer. All i had to do is decrease my sodium intake, increase my potassium (potassium and sodium fight for the right in your body). You know what my Dr. wanted to do? Give me Lexapro for anxiety (never took it and never will). So what im saying is, you can go to DR to Dr and get all the dignoses you want to make you cope with what you got, but i truly believe you dont have to live with it, its up to you how bad you want it. Oh by the way, i lived with muscle pain, aches and all over my body (mainly upper body), once is decreased my sodium and got my minerals back in balance, i dont have those problems anymore, only when my diet go south does it surface.


Noca - June 21

rycer im glad you can cure your pain by taking a little table salt but us fibromyalgia sufferers dont have that option. If you truly had the pain I do you wouldn't be saying "i wonder why people take meds for pain". Oh natural do you mean? Well then why don't you take some opium or alcohol? They are both found "naturally".

For fibromyalgia the cause and the cure is unknown, but it is treatable with medications and diet changes.




I so agree with you! I wish I could make the pain go away with something other than medications. I have tried exercise (and still do about a half hour of walking when I can), I have cut out sugar, caffeine, salt and tons of other things and it just never works! So, the medication is the answer for me as well. I will continue to do what I have to make me comfortable. Whether people agree or not. I have to do what is right for me. Again, if you don't have to take the meds to control your pain, then dont. But for the ones that do (you and I and PLENTY OTHERS) we will continue to do what we need to do. Do not EVER get down on yourself by having to take pain meds.

Talk to you soon!

p.s. today is a day where I wouldn't be at work or functioning without my pain meds. Thank GOODNESS for medication!


Stacey373 - June 21

Hi Chasmodai!

I don't know if you have FMS or not. The symptoms of FMS are ususally chronic pain for at least 3 months (in my case it was years), a vitamin D deficiency, and pain in the "tender points" when a doctor gives you an exam. And also chromic pain in all 4 quadrants of your body (right & left side of upper body and lower body). And there are other things like headaches and different stuff like that. And there are MANY associated conditions that go along with FMS and that we all suffer from too. (I'm sure you know all of this since your Mom has FMS too) When I first started researching FMS I found that almost every site or article said that most people with FMS initially go to their doctor for the chronic headaches. don't know if that's true for everyone else, but it was true in my case.

I definately know how hard it is to deal with having all those knots in your neck, shoulders, and arms. I have lived with those for YEARS and they come for NO reason. (didn't do anything to aggravate my body, so why do I have knots and my muscles hurt like I just did hard labor for the last 24 hours?)

But with fibromyalgia, it seems like it's so much more than just that one problem. Most of the time I can't "pin point" where my pain is. Sometimes it's my neck, shoulders, and arms and sometimes it's my lower back, hips, and legs and some days it's all of the above. every day I wake up not knowing how I'm going to feel. And it seems that one of the most common complaints that people with FMS have is that their body is aching so bad that it feels like you have the flu all the time.

I do know that muscle relaxers NEVER helped me much...the pain and problems never went away. The ONLY thing that would help with the pain was strong prescription pain pills. NOT over the counter stuff and homeopathic remedies didn't help either. I have literally spent YEARS and YEARS with doctors not believing me so I've probably tried EVERY thing that is out there to get rid of the pain and make myself feel better in general (like my body aching super bad and constant headaches)

anyways....I'm sure that Fantod will be on here soon to post a reply and she can say all of this so much better than I can! LOL Listen to her...she really does know what she's talking about!

Hope you start feeling better soon and get this all figured out, Stacey :o)


chasmodai - June 21


I have a low tolerance to pharmeceuticals. Truthfully, after all I've heard about Lyrica, it scares the crap out of me. Will def. do more research on the drugs though.


Isn't me seeking advice in a forum a way of being a detective? Didn't I say too that I was trying exercise and diet changes. That's great that you were able to cure your ills so completely by adding potasium. I am a definate fan of homeopathy. I entered college with the hopes of becoming a naturopathic doctor. I changed my major but still believe in it's usefulness.


I have major headaches often. Sometimes while the rest of me hurts and sometimes not. I currently have pain in all 4 quadrants, in both shoulders and down both of my thighs. What I am most curious about is whether or not fibromyalgia sufferers experience these muscular knots as a symptom and whether or not anyone who has been diagnosed with FMS experienced an onset of the pain similar to my story.


Fantod - June 22

chasmodai - Welcome to the board! The knots that you are describing are called "trigger points." They are muscles that have contracted and don't release on their own. They are exceedingly painful - I've had them myself. They can be injected with lidocaine or sarapin (derivative of the pitcher plant) to break the pain cycle. If you decide to go this route, have someone drive you and take an ice pack for the trip home. You could also ask your doctor about the Flector pain patch to help with the trigger points. This is a non narcotic patch that only kills pain where it is applied. This may or may not work. Trigger points are usually best addressed by injecting them.

If your mother has FMS, there is a pretty good chance that you do as well as there is a genetic component to this syndrome. Does your doctor know that your Mom has FMS? Was she listening if you did tell her about your mother? You need to see a rheumotologist for a definitive diagnosis. You can call your local hospital physician referral service and ask them for a recommmendation to a rheumy and/or a pain specialist (I have both) with an interest in FMS. Make sure that you take copies of any recent tests and bloodwork to save time and money.

Getting rid of Elavil was not a good idea. Also known as Amitriptyline, this medication is dispensed to address the sleep issues that accompany 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 day's activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Start taking the Elavil again.

Go to Amazon and order "Fibromyalgia for Dummies." Like all of the books in the dummies series, it contains good basic information. Read it and pass it around to friends and family members.

FMS is a disorder of the central nervous system that causes widespread, chronic pain. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. FMS is recognized by the National Arthritis Foundation, the Centers for Disease Control and the World Health Organization. OTC remedies do not work for the type of pain associated with FMS. You would only be damaging your liver and stomach by relying on Aleve or Tylenol.

This website has some of the most comprehensive information about FMS on the Internet. Take some time to read through all of the information contained in the blue boxes on the left-hand side of the website page. There is excellent concise information on FMS and the many "perks" that can be associated with it. The “perks” include Restless Leg Syndrome, Raynauds, GERD and a host of other conditions. Knowledge is power.

Your headaches could also be caused by TMJ in addition to the trigger points. You may be grinding or clenching your teeth and not be aware of it. Get checked by a dentist that has experience in treating TMJ. You may need a bite splint to wear at night to prevent bruxism. Most insurance companies will cover at least one splint. It is a far cheaper solution than needing to crown all of your teeth from excessive wear.

There are now three prescribed medications to treat the pain of FMS. You have probably seen the ads on TV for Lyrica. The most common complaint about Lyrica seems to be rapid weight gain. Unfortunately, many rheumatologists are not proactive about changing medication when this problem becomes apparent. The second option is Cymbalata which is an antidepressant. Cymbalata addresses both the pain and depression that usually accompanies FMS. I use that myself and have had good results. The newest medication has been used in Europe for decades. Savella was approved for use in the USA by the FDA last year. Many people seem to have good results with it. It takes time and a lot of tinkering to find the right dosage and medications to make you feel more comfortable.

Have you been tested for a vitamin D deficiency? This is done with a simple blood test. Many people with FMS are deficient in vitamin D. I'd also like to suggest that you be tested for gluten sensitivity. The most accurate result is obtained using a stool sample. It is entirely possible to be gluten sensitive without having Celiac Disease. Either of these issues can also cause widespread pain.

Some people with FMS are very sensitive to touch. This is called “Allydonia.” Pressure from clothing, bra straps, watchbands and anything that touches the skin may be uncomfortable. There is no solution to this issue other than to find clothing that feels comfortable. I have Allydonia but some days I am less sensitive and can wear whatever I want. Other days, I stand in my closet wishing that my nightdress was appropriate day wear out in public.

With regards to diet, if you use anything containing an artificial sweetener, get rid of it. That also includes Splenda. If you require a sweetener, use something made from the nontoxic Stevia plant like Truvia or Sun Crystals which can be found right alongside the other sweetners in any decent grocery store. Avoid deep fried food, lunchmeat and wine (nitrates) as they will probably increase your pain level too.

The key to living with FMS is learning to pace yourself. If you overdo anything, the payback can take days or even weeks to get over. You can still do many of the same things but you have to think outside the box. Break tasks down into more manageable increments. Get plenty of rest, watch your diet and eat high protein to prevent huge energy swings. If I have an event that I want to attend, I "save up" energy by reducing other activities. Even then, I may have to curtail my participation. But, in my estimation, something is better than nothing.

And finally, the National Fibromyalgia Association has a list of fibro-friendly doctors available for quite a few states. Not all rheumatologists are created equal. If you feel that your current doctor is not addressing your needs, than get a second opinion. Good luck and let us know how you are doing. Take care and God Bless.


Stacey373 - June 22

Hi Chasmodai!


I don't know about everyone else, but I definately experience the type of pain you are talking about almost on a daily basis. I constantly have knots in my neck, shoulders, and arms. I guess they are called "trigger points' and if you push on one of them it will shoot pain up into my head and down my arms. and like I said before, these knots come up for absolutely no reason. My husband is constantly rubbing my neck and shoulders trying to get rid of them and release some of the pain and pressure they cause.

I have constant headaches. Although my headaches aren't just caused by one thing, but the knots are definately one reason. My headaches get so bad that usually I'm in bed once a week for at least 3 days. sometimes I have better months than others.

I hope you find a doctor to listen to you. I actually had to research fibromyalgia for myself. I have a friend whose Mom has FMS and I realized we had the exact same symptoms. I ended up going to my doctor with all the research and after a few tests, I was diagnosed with FMS. So don't give are the only one who really knows what's going on with your body and you just need to make sure the doctor understands too!

Hope you have a good day! Stacey :o)


chasmodai - June 22


I stopped taking the elavil because I started getting lightheaded and dizzy. I wasn't sure which of the meds was causing it because I started taking all three at the same time. I started seeing this doc in particular because that is where my mom goes, but I will give the rheumatologist some more thought and mos def check the fms site. After checking out that MS diet book I have given up almost all sugar, meat and bread. I ate a hot pocket last night (because I was lazy) and wanted to pass out an hour later. And I feel you on clothes, some days, I hate my freaking bra.


Thanks for your reply. Honestly, I wasn't sure whether or not the knots, in addition to the burning/stabbing pain, were a symptom. I looked up a FMS trigger point map online and tried to test myself. Most of them hurt like a mofo, and in places where I wasn't experiencing 'regular' pain. It seems kind of messed up to think about pain as regular. But jeez, I hit on the ones under my butt, and my thighs are still burning.

* As a side, have any of yall tried a physical therapist? Results?


Fantod - June 22

chasmodai - If Elavil was making you dizzy and lightheaded than you and your doctor need to find another sleep medication. Deep sleep is a crucial part of treating FMS.

I was in PT for three months because of bursitis in both hips and shoulders. It did not help as I was unable to do pretty much anything the therapist suggested. We ended up with just doing massage. If you are thinking that PT is going to lessen your symptoms, I doubt it. Exercise is recommended for FMS but you have to decide what you can stand. Water aerobics for arthritics or Tai Chi (which you can do at home) are two good choices. Walking is another option. Most of us really struggle with this as chronic pain is not the best motivator and we are all chronically exhausted.

Pretty much the only resolution is a proper diagnosis and prescribed medication. As you know, OTC medication is not effective.

It doesn't sound like your mother's doctor is up to date on the current treatment protocol for FMS. I would encourage you to find a rheumotologist and make an appointment. The longer a chronic pain cycle continues, the harder it is to manage or stop. Take care.


Stacey373 - June 24

I tried physical therapy before I was diagnosed with FMS. It was the WORSE thing ever! I would leave there in MORE pain and most of the time the PT caused me to get a headache. Without doing any sort of x-rays or an MRI or whatever...they automatically decided that my headaches and overall pain was caused by my "poor" posture. (my poor posture was because of the pain I was in, not the other way around) I honestly felt like they didn't really try to find what was the best PT for me...they just ran me through there like "cattle" and it was a "one size fits all" PT program. It was definately the biggest waste of time and money for me.

I have to assume with the FMS diagnosis they would treat me differently. But I haven't been back there since I was diagnosed. My "personal exercise program" is walking down my driveway to get the mail when the weather is nice and I feel good enough to do it (my driveway is about 1/4 mile long each way) And each day I try to do as much housework as possible (sometimes that's not much, but I do what I can) On my grocery shopping days, that's all I can do, which is a total of about 4 hours (I live about 1 hour from the grocery store) other than that, I'm planning to buy a yoga DVD and start doing the stretches. I really think that some basic yoga would help all the "muscle problems" even if it is just a little bit of help. A little is better than nothing!

My "advice" for the PT? Try it! If you don't like it or it doesn't help you...then stop! You really don't know until you try!

I do agree with Fantod about getting some sort of sleeping meds. Right now I'm taking muscle relaxers and OTC sleeping pills and most nights that combination works pretty good for me. Although last night I couldn't sleep AT ALL and I sure am feeling it this morning!

Take care, Stacey :o)


chasmodai - July 8

Yes, I have fibromyalgia. yeah.


irishfairy_magik - July 20

Hello to all and everyone. I am here to try and find out if this may be whats wrong with me. For years I have dealt with the nerves in my face tingling and going numb. I hadn't thought much of it until my hands and feet started to go numb just out of the blue. My arms now are doing the same thing they feel cold and numb and tingle and hurt. I have awoke during the night with my arms this way. I do not sleep good, have anxiety and depression and "loose stools" that time of the month. I have not been able to figure out what can be doing this. Now my vision is getting worse. Could I seriously have FMS? My husband has been helping me and suggested since my symptoms are worse to look into this. Please help, thanks.


mm30 - July 22

hi irishfairy_magik,
when you say you have tingling hands and feet do you mean poor circulation? i have just been diagnosed myself. i suffer most of what you have mentioned but also severe aches in my joints and ribs.
earlier this year i was diagnosed with anxiety and depression but with that came all these additional pains. i was going through a very hard time and when i got upset i would get deep pains in my rib lung area. i was massaging my ribs one day and came across a couple of cists. i completely paniced ( which of course made me anxious and the pain worse) i made and appointment straight away to see my dr and she tested all my pressure points. most of them hurt. she said the cists were a swelling in my glands on front of the ribs. she told me i had fibro and it was due to trauma that i have gone through and am still going through.

i would suggest you go to your dr and dont be afraid to mention that you think it might be fibro. sometimes you can really panic yourself (especially if you are anything like me) reading up on the net about these things. Put your mind at ease with a professional and best of luck.


Stacey373 - July 22

Hi Everyone!

Chasmodai- If you happen to read this, I wanted to tell you I'm sorry that you were diagnosed with this. On the other hand, you must be relieved to finally find out what's going on with your body. Now you can start figuring out how to handle this the best way....I call it "trial and error"...learning what you can and can't do and how much really is "too much".

Irishfairy_magik- I also agree that you should talk to your doctor about all of your symptoms. From my experience, the doctor will usually start out by ruling everything else out that it could be first. Which means a lot of blood tests and probably an MRI and maybe even send you to some sort of specialist. Once everything else is ruled out, they can give you a blood test to find out if you have a Vitamin D deficiency. Most Fibro sufferers have this deficiency and it is actually the ONLY test that can be done for diagnosing Fibro. The other thing the doctor needs to do is give you the "Tender Point" test. If you don't already know what that is...there are 18 points on your body that if you apply a small amount of pressure will hurt like crazy!

Other than that, the other qualifications the doctor will look at is if you have other Fibro symptoms...IBS, severe fatigue, etc. If you have had chronic pain for at least 3 months or more (I'm pretty sure most of us have it for YEARS before finally being diagnosed!) And also if you have chronic pain in all 4 quadrants of the body.

I think I wrote all of this before on this post to someone else asking if they had fibro...sorry if I'm repeating myself!

I hope you talk to your doctor soon and get some sort of matter what that may be. Not knowing is probably the hardest thing to deal with, but once you do get a diagnosis, then you can learn how to deal with whatever it is.

Best of Luck and I hope everyone Takes Care, Stacey :o)



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