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Is this possibly Fibromyalgia?
15 Replies
thecudd - September 20

I am a 50 year old perimenopausal female. For over 1 1/2 years, I have been trying to find out what is wrong with me, and after countless visits to 3 different neurologists, and numerous EMG tests, MRI's, spinal tap, etc., I have been tested for MS, Parkinsons, ALS, and have basically been told that I have benign fasciculation syndrome, with no conclusive diagnosis because all of the tests come back negative and reveal nothing. But, the way I feel, something is definitely wrong. I am beginning to think that my problem may be Fibromyalgia. My symptoms include muscle twitching and spasms - I get twitching everywheres with no patterns or trends. I have recurrent pain in my knees and upper legs, upper arms, fingers, neck. I also get pinches and pins and needles in my lower legs, especially during resting state and after I take a long walk or exercise. I have noticed that my symptoms are triggered by weather changes - especially when the weather turns cooler. I have TMJ and frequently get nausea, have headaches, dizziness, balance issues and feel exhausted. Chewing and eating is sometimes painful. I also have recurrent digestive problems, including IBS. I am very foggy. I do not feel sharp and I am also feeling depressed. While I have been able to work through these problems, I do feel like my level of energy is dimishing, and while I am present at my job, my level of presenteeism is diminishing. Could this be Fibromyalgia? My Neurologist didn't think I needed to see a Rheumotologist, although he recently suggested that I try Cymbalta for depression and perhaps a touch of Fybromyalgia, which he did not give me a conclusive diagnosis of. I need some answers as this is driving me nuts. What do you think?


axxie - September 21

Hello thecudd, and welcome to the most comprehensive site.

Fibromyalgia means pain, in muscles, of the connective tissue of tendons and ligaments and groups of symptoms that occur together. For many years the medical profession called it by many different names, including "chronic rheumatism and fibrositis". Only because the medical field did not understand what was causing FMS. Today it's totally different as FMS has been recognized as a true illness and a major cause of disability. Even though most physicians today still lack the kills to diagnose and treat it effectively. FMS is not curable at the moment but it is very treatable but can be an incentive for you and your team of doctors to improve your health and quality of life.

At the moment you have the classic case of all of what spells Fibromyalgia, the only problem you have is a neurologist who thinks you have just "a touch of fibro" there are no such thing as having just a touch, when you have it, trust me your body screams help and you want to find something anything to calm it down. The one good thing, is you have been through many tests that all confirm that you do not have many other illnesses, precisely why the neurologists have sent you for those tests was to rule out other illnesses that have some of the same symptoms.

First, do see a Rheumotologist he/she can confirm to you that you do indeed have fibro and how to treat it. Cymbalta is one of the choices that have had great success in treating anything from the pain to the depression that happens to come because our bodies cannot cope long with pain. Many of us are on Cymbalta and others have different kinds of prescriptions to help in treating fibro. So do yourself a favor and do ask for a referral and if you cannot find rheumy you can peruse this site and find fibro friendly rheumy, you just have to click on "medical treatment" on the top of this pages, same with the medication.

I wish you luck and strength, I would gladly would love to tell you that you don't have fibro, unfortunately with the symptoms you have so describe seem to indicate that you do have fibro. It is one illness that I would not wish on my worst enemy, as it can play havoc your life.

I do have some good news, this illness with the right medication can be managed quite well. It all depends on you in changing your diet and your lifestyle.

Please return to the site and let us know your outcome when you have visited a rheumy and do indeed take up the offer of being treated with Cymbalta.

Good luck and may you find peace in your life.



thecudd - September 21

Thank you for your comments. I will make an appointment to see a Rheumotologist this week.


katrinalove_1 - September 25

Hi theCudd, It sure sounds like you have fibro. from your symptoms. My daughter and I both have fibromyalgia and she has most of the same symptoms you have. It sounds like RLS. We both have it. I take requip for my RLS. It works very well. I had to increase to 3 mg a night and so far I am better. It kept me awake all night at times. I have had fibro. for 20 years and just got diagnosed a couple of weeks ago. I went to a rheumatologist/neurologist. My dr. gave me injections in the hip and knee. I have to be careful with meds. because I have CKD. Hope this helps you.


brooksidefarm - September 25

Hi thecudd! I was able to help my doctor when I was diagnosed by going to WebMD. I know, I know some people hate that, but it can help. Go through the symptom checker. When you do, click on each body part and detailed questions will come up depending on each answer. It took me over an hour, but was worth it.


FibroGal - September 26

Hi, thecudd. Your description sounds like one I nearly could have written. It sounds like you could very well have fibro. I have all the symptoms you wrote about. After I take a walk, I get a slew of twitches in my lower back, hips and thighs. I get numbness, prickling,and pins and needles feelings. I can just so relate to what you described. Take heart. Fibro doesn't feel good but it's not progressive in the sense that it's not doing any physical damage. For me, it helps to remember that.


thecudd - September 27

Thank you all for your comments. It is so refreshing to know that there are others out there who are experiencing what I am experiencing, and that I am not imagining these things. I did see a Rheumotologist this week, and I came out of her office feeling very unsettled. She does not think I have fibromyalgia because I am not demonstrating excruciation pain in all of the tender points. Rather, she thinks I have polymyalgia rheumatica. Interestingly enought though, she did blood work on me, and the results came back negative - no signs of inflammation or sedamentation problems, which are hallmarks of polymyalgia . Nevertheless, she is still recommending that I take a trial of steroids to rule out this diagnosis, which I am hesitant about doing. I truly believe that her diagnosis is wrong, but I don't know how to go about discussing this with her. I know in my heart that I have firomyalgia. She also had no explanation for all of the other symptoms like muscle twitching, nausea, dizziness, fogginess, TMJ, etc., and all she said was that I probably have a couple of different things going on at the same time. And more importantly, she told me that muscle twitching is not a symptom of fibromyalgia, which is very puzzling to me because I have read about many fibro patients suffering from muscle twitches. Amy I nuts? What do you suggest I do? Should I try Cymbalta and see what happens? My Neurologist said he would give me a Rx for Cymbalta if I agreed. I don't love the idea, but I need relief and I don't think steroids are the answer. Your thoughts? And thank you all again. You are terrific, and I wish that you all feel better soon. Best Regards,


Fantod - September 27

Get another opinion now. Take copies of your recent test results with you. It sounds like the rheumotologist you saw is adverse to treating Fibromyalgia (FMS). We could speculate endlessly as to her thought process. The bottom line is she is not doing you any favors. There are still plenty of doctor's out there that think FMS is a figment of our collective imaginations. You can call your local hospital physician referral service and ask them for a recommendation to rheumotologist and/or a pain specialist with an interest in FMS. You can also go to the National Fibromyalgia Association website and register. Then you will be able to see a list of fibro-friendly doctors in your area.

By the way, it is entirely possible not to have all of the "required" tender points and still havae FMS. Most of us will tell you that the tender points vary from day to day in terms of soreness. And most of the people on this board have daily problems with muscles twitching in one spot or another. Perhaps you should give your doctor this website address. It seems she could use some practical education on the subject.

You should take your doctor's offer regarding Cymbalata. Many people on this board take including myself. It works well for relieving the widespread chronic pain and the depression that usually accompanies FMS. Only certain classes of prescribed medication work for FMS. The longer a chronic pain cycle continues the harder it is to manage or stop. OTC remedies do not work for FMS. Treating FMS properly is crucial to managing it. It places an enormous amount of stress on the body.

I would also be hesitant to take a round steriods especially if your blood levels do not support a diagnosis of polymyalgia. Steriods compromise the immune system and should only be used where there is a clear indication that it is required. I have to question your rhuemotologist's line of reasoning for this not-so-good idea. I think you should see someone else as soon as possible and sidestep the steriods until you have a better idea what is causing the problems you are experiencing. Take care.


axxie - September 28

Hello again thecudd, have you had blood tests from the rheumy, has she done a sed blood test or whether any of red blood cells and platelets (thrombocytes) in your blood. Platelets are colorless blood cells that help stop blood loss when you're injured. Most people with polymyalgia rheumatica have an unusually high number of these cells (thrombocytosis). On the other hand, many people with polymyalgia rheumatica have a lower number of red blood cells than normal and are often anemic. Also many women of age of 70 over get has your rheumy done your medical history and current symptoms and conduct a thorough physical exam. polymyalgia rheumatica are similar to those of a number of other conditions, including rheumatoid arthritis and polymyositis — a disease that causes muscle inflammation and weakness.

Unless your rheumy or primary has done all these tests and can confirm that is what you have, I would look elsewhere for a rheumy

You may also have a simple and inexpensive blood test that checks levels of C-reactive protein in your blood. The protein is produced by your liver as part of a normal immune system response to injury or infection. Among other things, high blood levels of C-reactive protein may indicate the presence of inflammation.


FibroGal - September 28


I agree with Fantod. Do not take steroids until you get another opinion, which I urge you to do right away.

I also agree that you do not have to all the tender points to have FM. I do not have them all but have a solid diagnosis of FM.

All the credible sources say muscle twitches are part of fibro, not to mention the other things you say you are experiencing. The fact that your rheumy was still confused after negative testing makes it sound all the more likely it is FM you are dealing with.

So, please, you must get another opinion. Keep us posted. (((Hugs)))


pfiinch - September 29

I finally got both my Dr.s to put in my charts fibro do to patients history.They both agree that I have all the symptons so this will help for the day of fighting ssi and ssd.You sure seem to fit the bill.I take cymbalta and change my dosage according to the way I feel.I also take pain eds which don't always seem to touch it.I also take lyrica which helps the most and ialso use it on how I feel once I am up moving around.I agree with other posters about the steroid shots.I have had them and no good for me had bad reactions to them.For a good night sleep I am on xanax 1 hour before bed.At least I get a good 5-8 hours of slep.Very important.Just don't let it eat up your pocket and your life.Stay happy and laugh.On a good day do what you really like for the pain may come back later and it is well worth the doing things we enjoy.Good Luck and kep us informed.There is some light at the end of the tunnel.Just do your best ot enjoy life at your pace.God Bless Patti F


thecudd - September 30

Let me say how wonderful you all are. I am so happy that I found this blog. Thank you so much for your kind words and support. It means a lot to me.

My Rheumotologist did a blood test. Results came back completely normal, except for my Vitamin D level, which was slightly low. Sed rate was normal and there was no evidence of inflammation. Nevertheless, she is still suggesting a short dosage of steroids to "rule out" polymyalgia rheumatica, which I would think it is unlikely that I have because of the results of the blood test. I also asked her about Giant Cell Arteritis, which she told me that I do not have. When I tried talking this through with her, she was very short with me. She infatically told me that I do not have fybromalgia, and even with the clean blood test results, she's pushing on polymyalgia. I just don't get it, and I am never going back to her again.

Meanwhile, my symptoms have worsened today, and since I started with these problems last year, I feel that I have weakened and that the range of pain has increased. It has gotten cool her in New York City, and it seems like every time the weather gets cool, my muscle pain increases in intensity and range, as well as other symptoms including headaches, TMJ, facial sensations, increased twitching, etc., - my hands are really hurting today, and I could go on and on. I have an appointment with my Neurologist in 2 weeks and I'm strongly considering Cymbalta.

By the way, do any of you ever get twitches on your face and strange sensations in your cheek or jaw area? This could be part of TMJ, but then again, I don't know.

I will keep you all posted, and again, thank you for your continued support. Best Regards, and feel better. Joan


toots2889 - September 30

thecudd, it definitly sounds like you got a rheumy who doesnt agree with fibro. I truly believe from what you descibed that you have it. Do not get the steroid injections. Its a waste. I would get on the cymbalta as soon as you can. Ive had fibro for most of my life according to my fibro dr, but diagnosed 3yrs ago. I take cymbalta and love it. Make an appt. with fibro-friendly doc and im sure youll get the answer your looking for. You need to be getting treatment for it or it will continue to get worse. I hope I was of some help and wish you the best of luck. Let us know how your doing, as we will be thinking and praying for you.


axxie - October 1

I can't get over a doctor who would treat a patient for something she does not show and blood tests are negative. Wow, I would report her, that is somewhat scary... has she at least told you, her reasoning behind her treatment or why she thinks you have sed. It just doesn't make sense to treat someone with large doses of steroids, my doctor has always advocated that you just don't give steroids of any kind, unless you have a clear cut diagnose that would warrant it. The side affects that you want to live without, unless you had a diagnose that will be help on sterioid, such as someone who has asthma if you don't give it to them, then the concequence would be the patient would die. Clearly that is not you.

Please see another rheumy and do take the offer of taking cymbalta, there are many people who take cymbalta and works for them for fibro.

Fibro pain and tests is not as clear cut as many would like to think, one day you may not have the pain in all quandrants. That the very nature of fibro.

Good luck to you and take it easy and remember ask many questions and jot it down in your pain management for fibro agenda. It helps when going to see a new doctor even for just a consult. Some doctors do miss things, so at least this gives you a point of response.

Let us know how you are feeling and when you have received news of a new rheumy.


Fantod - October 1

Bravo for standing up for yourself and not agreeing with the doctor about steroids! Seeing someone else is imperative. When you get a diagnosis of Fibromyalgia (FMS) or something other than polymyalgia I would write a letter of complaint to your healthcare provider and the hospital system that she is affiliated with. You could save a lot of other people the same sort of despicable treatment. Let us know how you are doing. Take care.


FibroGal - October 1

I, too, hope you will report the doctor to the ACR and AMA (see contact info below).

When my son was a young child, his pediatrician was negligent and his treatment, reckless. (I was divorced and did not have medical authority of my son at the time; my son's doctor was chosen and advised by his dad). The ped. had my son on various combinations of psychotropic drugs that were physically harmful to him. Prescribing such drugs were beyond his realm of expertise--and my son was suffering because of it. The dr. paid no attention to my concerns because I had no legal authority. I reported him to the AMA. They raided his office with subpoenas in hand for his medical records. As a result, the doctor's conduct was laid bare for public scrutiny and my son was released as a patient.

American College of Rheumatology
1800 Century Place, Suite 250
Atlanta, GA 30345-4300
Phone: 404 633 3777
Fax: 404 633 1870

American Medical Association
515 N. State Street
Chicago, IL 60654
(800) 621-8335



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