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What is Fibromyalgia?

Nov 13, 2015 9:12 AM


Dear community members,

My name is Dr. Marc Fouradoulas and I am on the team of the Pain Companion medical advisors. Besides the support that you find from other members in this community, we would like to provide qualified articles about important pain related topics. We hope this will help you to learn more about your condition and ways to deal with it. I would like to start off with an article about fibromyalgia:
 
Fibromyalgia - An Introduction
Fibromyalgia is the second most common chronic musculoskeletal pain disorder after osteoarthritis. It affects about 2 to 8% of the population, primarily women in their middle age1. In the US about 10 million people are diagnosed with fibromyalgia2. The occurrence is similar in different countries, cultures and ethnic groups but increases if a first-degree family member is diagnosed with it. 
 
What is fibromyalgia and how is it diagnosed?
Fibromyalgia is characterized by widespread pain and accompanied by other symptoms such as fatigue, cognitive problems and sleep disturbances. The pain is diffuse and not localized in specific body parts but in the soft tissue, often referred to as generalized tenderness. The diagnostic criteria proposed by the American College of Rheumatology in 20103 include chronic (>3 months) widespread pain and a score of the four items fatigue, non-restorative sleep, cognitive symptoms (concentration, dizziness, memory problems) and sum of other unspecific symptoms like tingling, irritable bowel or bladder, dry eyes or headache.
Other causes like injury or inflammation must be excluded, although it often (10-30%) occurs in addition to other rheumatic disorders like rheumatoid arthritis, lupus and ankylosing spondylitis. Other frequent concurrent disorders are irritable bowel syndrome, temporomandibular joint disorder painful bladder syndrome and many more so called functional disorders.
 
The diagnostic criteria changed in 2010, as the only clinical criterion „tender-points“ was abandoned. Tender points referred to the observation that the pain threshold in fibromyalgia is generally lowered, leading to tenderness all over the body, especially around joints, when localized pressure is applied. This doesn't mean that there is damage in the tissue. Rather the processing of pain is amplified by the nervous system: What others experience as touch, fibromyalgia patients experience as pain. For this reason, it is considered a "centralized pain disorder" and not a peripheral one.  
So to cut a long story short, fibromyalgia is diagnosed based on an arithmetic score of unspecific symptoms without markers in blood, imaging or physical examination.   

The problem with the fibromyalgia diagnosis
The diagnostic criteria were initially supposed to accelerate research and were never meant to define a distinct disorder. Hence the diagnosis sums up symptoms that occur together above-average but may have different underlying causes. Therefore, it's better to use the term Fibromyalgia Syndrome (FMS). FMS is a broad label that gives the health care professional an idea of what symptoms you are talking about and that other causes like inflammation have been ruled out. But the value of the label in the treatment process is limited since the understanding of the cause and development of FMS is still very limited. So it's important not to overemphasize this term. On the other side, the diagnosis can point you in the right direction, prevent further unnecessary diagnostic procedures and help establish support groups. It also stresses that the pain is not due to damage in painful regions and is not progressive. 

What are the causes of FMS?
Several biological (genetic, inflammation), psychological and social factors have been identified to contribute to the development of FMS. In recent years FMS has been increasingly considered to be a disorder of the stress processing system. The processing of stress and pain are closely interlinked and affect each other, resulting in disordered pain modulation in the central nervous system. Childhood trauma or neglect, physical trauma and psychological factors like anxiety, depression and action proneness have been associated with the onset of FMS4. In other words, chronic psychological as well as physical stress seem to play a major role. This makes treatment challenging but explains the focus in psychological and psychopharmacological interventions. There is a lot more to say about this condition and treatment options and we will cover it in following articles.

I am eager to hear your thoughts and questions regarding this article. Please let me know what other topics you would like to hear more about.

Kind regards,
Dr. Marc Fouradoulas



[1]
Clauw, Daniel J. "Fibromyalgia: a clinical review." Jama 311.15 (2014): 1547-1555.
[2]
http://www.fmcpaware.org/fibromyalgia/prevalence.html
[3]
http://www.rheumatology.org/Portals/0/Files/2010_Preliminary_Diagnostic_Criteria.pdf
[4]
Egle, ULRICH T., and B. Zentgraf. "Psychosomatische Schmerztherapie."Stuttgart: Kohlhammer (2014).

Nov 13, 2015 10:59 AM

Diagnosed with fibro 10 years ago. Last 2 years severe. Moderate inflammation (sed rate) 10 years.

My opinion:

This article is no more informative than anything else.

I would like to see topics:

1. Does it have a dormant stage? If so can you get it to go dormant.


2. Is it a syndrome or a symptom because of other things? Autoimmune disease related or a symptom of? You listed some but I started with hashimotos thyroid and thyroid issues seem to also be a common factor.

3. More in depth information on nervous system. Such as why can't they figure out anything to help. I am one that can barely be touched or have pressure.

4. Information on fibro testing. I have read that there is testing for fibro some say blood. The one I was interested in is the brain scans. Genetics?

5. Why the medical field or doctors differ completely on diagnosis, symptoms if it is real and so on. I think what anyone would benefit from is a doctor written informational for patients to share with thier doctor.

Nov 13, 2015 11:03 AM

Oh one more cronic fatigue sydrome, cronic pain syndrome, fibro and similar are they one in the same?

Nov 13, 2015 8:32 PM

Dr. Fouradoulas, you mentioned that fibromyalgia is considered a "Centralized pain disorder." Is that the same thing as "central Sensitization Syndrome?". 🙏🌼

Nov 13, 2015 8:41 PM

Flappy when I googled centralized pain disorder the only results were for syndrome. Not playing doctor I just look up everything. I am curious now to the answer.

Nov 14, 2015 1:09 AM

I don't have Fibromyalgia so I found this article interesting. How about an article about pain and insomnia? Is there research or a correlation between these two?

Nov 14, 2015 2:06 AM

Many thanks for all your feedback and questions so far. Dr. Fouradoulas is usually working for us on Tuesdays and Fridays. He will have a look at all your questions and feedback on next Tuesday.

More feedback is still very welcome.

Kind regards,
Daniel

Nov 14, 2015 8:01 AM

Shammagren, I'm very curious. I think I mentioned that a doc at Mayo told me & my hubby I have the Central Sensitization Disorder. But it wasn't listed in my discharge documentation. If you Google the words + Mayo you should find a you tube video of the doc presenting this dx information. And watching it it made a lot of sense in what the primary Mario doc told us, about my brain misfiring in the nerves. I'm interested to hear the explanation by Dr. Fouradoulas. 🙏🌼

Nov 14, 2015 9:18 AM

I would like to know more about a rare blood disorder called LCDD, it causes my dad pain everyday and I herd there is no cure for it.

Nov 14, 2015 2:09 PM

I've heard I might have fibro, but I can't tell what makes it different than just the clatter of symptoms I have.

Is it a nerve issue specifically?

Also, what you stated about pressure ("touch") feeling like pain, seems like it happens with every auto immune disorder or chronic illness I've ever heard of, and can be called allodynia or hyperalgesia, especially in cases of Complex Regional Pain Syndrome (CRPS/RSD), which I have.

Nov 14, 2015 2:24 PM

What makes fibro different?

This article seems pretty similar to one from any site you can search for on Google. Not that it's a bad thing, I was just hoping for new info.

Just some dx I have (or might have, since my docs aren't sure) :
SLE, absent seizures, CRPS, anxiety, depression, PTSD, inattentive ADHD, asthma, chronic sinusitis, fibro, hypothyroidism, MTHFR C677T gene mutation double copy, infertility, Parkinson's, breathing problems, IBS, arthritis, carpal tunnel, restless leg syndrome, circulation issues, endometriosis, fibroids, peripheral neuropathies, and a few other things I'm forgetting.

I'm 15, my family all has health issues, my grandma wanted to be a doc but had chemical sensitivity, so couldn't do some of the required labs for medical school.

I have a lot of questions, but most docs I've met just don't know, and I guess there's not a ton of conclusive research, but then how do you diagnose?

Nov 14, 2015 9:07 PM

Flappy I don't know if I got the right video it was a left handed guy in a blue shirt. Reminded me of a heavier version of Kevin bacon. It was a mayo clinic video.

Anyway he didn't call it disorder or syndrome. I started crying he described me perfectly. My son age 10 came in while I was watching it and said mom they are talking about what you have. He feels terrible at times because I had a terrible health ridden pregnancy followed by a c-section. I of course explain I would do it all over again to have him.

Now I am more interested than ever.

Nov 15, 2015 4:12 AM

Thanks for the feedback, suggestions and questions!
There are some very good points. But first, the article was meant as an introduction and a start of a series of articles about Fibromyalgia. A lot can written about FMS so I want to do this step by step and on an interactive approach. We can go into more specify areas depending on your interest. I know you do your own research and that's good but it might be difficult to judge the significance of your findings. I noticed that you're interested in the course, genetics, brain activity in FMS as well as sleep difficulties and the term central sensitization. I will cover them in my next articles.

- As for "central sensitivity syndrome" (CSS). The youtube video from the Mayo Clinic (Dr. Sletten) is good, but it means an even broader concept than pain sensitization. It's a and very complex concept but it's better in explaining the diversity and overlap of symptoms that occur in disorders like FMS and Chronic fatigue syndrome or Irritable Bowel. Most doctors don't know about it and it's not a diagnosis so you won't read about it in your discharge letter. Basically, peripheral nerve signals get more amplified in the spinal cord and brain than they should. But the central nervous system is plastic so this can be turned around. I will go more into in the following article.

- Chronic Fatigue Syndrome is a similar "umbrella diagnosis" for something we don't understand very well. It describes a set of symptoms that occur together above-average but it's not an disease entity and very heterogenic. Also here, there are no diagnostic tests other than the symptom score and this leads to controversy.

- The value of those diagnoses is limited because there is no single cause to treat. The research data on treatment it limited as well because we are be researching a syndrome with different causes. This makes it even more important that you become your own expert on what works for you and what doesn't and that you share your experience with the community. The Pain Diary can help you keep track of the changes in pain pattern as you take different actions/ treatments.

So much for now, I'll be writing mainly Tuesdays and Fridays.
Thanks for your interest!

Nov 15, 2015 8:07 PM

Dr. Fouradoulas, thank you for responding. I'm not sure I understand the difference of Centralized pain disorder & CSS. 🙏🌼

Nov 17, 2015 7:32 AM

I think treatment options or living with fibromyalgia and how it affects different individuals on a daily basis could help, I was diagnosed less than a month ago and I'm at risk of losing my job, which means it have to sell my house and I can't walk very well anymore either, I struggle to look after myself now which is very difficult as I used to be so independent

Nov 17, 2015 8:59 AM

Can an uncontrolled diabetic have these symptoms due to diabetes or would it still b FmS ..?

Nov 17, 2015 2:06 PM

That's a good question Metformin. I downloaded an app called "Fibromyalgia" by Gallencraft. It has really good information. Check it out. 🙏🌼

Nov 20, 2015 3:45 PM

diabetes

Metformin, there is no information on diabetes as a risk factor for for FMS. I'd rather doubt it because we would see FMS to more frequent in cases of diabetes.

Nov 20, 2015 6:29 PM

Thanks Dr. Fouradoulas for taking the time to help us disseminate all of the information out there!

I was told about 18 years ago by my PCP that he thought that it was possible I had FMS; but he said he didn't want to pigeon hole me because insurance companies considered it a catch-all diagnosis and believed that no such thing actually existed. I never gave it much more thought and continued to let him treat things that I now am told by my new Doctors are mostly symptoms! Some I've had since childhood and was told I'd "grow out of" (instead, they've intensified), and some have developed more recently. One thing I've had for years: random pains that nearly had me believing that somewhere there is a voodoo doll of me and small children and their pets were taking turns playing with it!

Sometimes it feels like a pin is stabbing me in the arm, leg, head, abdomen, armpit, etc... At other times it feels like a limb is being twisted out of the socket. Sometimes the room spins–even if I'm sitting or laying down! I get nauseated for no apparent reason, or a bout of somethings washes over me like I may pass out. (Sometimes that's accompanied by a rumbling very low in the gut and I'm really afraid to move until it passes). There is such a long laundry list, and I'm trying to put it all together so that when I see my new PCP in three weeks, he'll be able to determine what goes with what...

And so my question is this: How frequently would you say that FMS can be mis-diagnosed if other symptoms are not immediately apparent? Or if I think of red dots when my Dr. asks me about rashes on my face or hands; but I have been treating some kind of facial dermatitis with Betamethasone Dipropionate lotion, and my new PCP has also added Metronidoazole Gel for rosascia? Or that sometimes the skin around all of my cuticles starts to randomly get get inflamed and peel til it bleeds? Are these considered "rashes?"

After years of wondering if I'm some kind of a hypochondriac, the last thing I want is to go back ask if I can change my answers... So maybe a good subject for an article would be a more in-depth look at the questions that the Dr asks when assessing FMS, and what do some of these questions really mean? My assessment on Monday took nearly 45 minutes, and I was asked at least three times about a rash. Now I'm worried that I was wrong in saying no!

Thanks again for being here for all of us!! :)

Nov 21, 2015 11:39 PM

Hi Dr. Fouradoules, Hi everyone,

I was diagnosed with Systemic Lupus in 2007. Since then, I have 3 secondary diagnoses of: Sjogrens Syndrome, Complex Regional Pain Syndrome, and Fibromyalgia.

1. Is there really a difference between CRPS and Fibro? If so, what is the difference?

Nov 22, 2015 12:00 AM

Shiovahn, Fibromyalgia, they don't know the cause. But with CRPS, from my research and what has been explained to me at the pain clinic is that there is a problem in the brain in the sympathetic nervous system. I had an accident 15 years ago where I fell off a ladder and had a compound fracture in my leg and ankle. A few years later, I developed CRPS on the large wound area that broke open during my break. When it flares up, it turns cold, burns, turns color. The doctor explained that the sympathetic nervous system is broke and at various times thinks that I have been wounded, so it sends a response to the site. The same is the process for regular sites that are not wounds. They may have suffered some earlier trauma though.

Nov 22, 2015 12:02 AM

Please try not to use words like heterogenic. Not everyone went to medical school. Talk to us in lay terms. I understand you perfectly but there are those that might not. I have had FM and chronic myofacial pain syndrome for over 20 yrs. I also have MS, DDD, polyneuropathy and diabetes just to name a few. I have knots in certain places on my body that have to be either dry needled to break them up, and or lidocaine injections. After that, I I have them worked out in a few sessions of not so relaxing massage therapy which then makes me ill for days afterwards.

Nov 22, 2015 7:14 AM

Cearea, I have had those dry needle injections to break up wicked spasms and bundles of scar tissue and then had massage to finish "breaking them up" OMG, the first time I had that done, I almost passed out and the second time, it hurt so badly that I flushed, got really hot and sweaty and I DID pass out. I haven't had that done since. It's a nightmare to me. Yesterday I was so ill with vomiting that I tore the scar tissue all down my left side from under my shoulder blade and I can't pick up my arm. I also have sores in my mouth, feel like I have sand in my eyes and my mouth is very dry. (Dr. is testing me for Sjrogens). I have been running a fever and the sub-mandibular gland (the gland under my jawbone) on the right side is infected from one of the sores. I know what you mean about needing to recuperate after these things. I was away for the 5 days for my 50th and got home and was immediately sick by the next morning so right now I'm struggling. It'll be ok though, it always is. One foot in front of the other, one moment, one hour, one day at a time. {{{{Hugs}}}}💕🙏🏻🌻

Nov 22, 2015 8:29 AM

shiovahn,
CRPS and FMS are the same in regard that they both:
- are syndromes
- involve chronic pain
- mainly affect women (3-4x more often)
- involve brain and spinal cord processes (as always in chronic pain: "central sensitization", pain inhibition in the brain is impaired)
- the development is only partly understood and involves multiple factors
- are "challenging" in treatment

The difference is that CRPS usually devellops in limbs after trauma (injury, surgery; in 7% of limb fractures) and has signs of vegetative (or sympathetic) nervous system disorder: changes in temperature and color of the skin, swelling and sweating of the affected hand.
One long term study showed that around 30% of cases resolve over time, 50% remain stable.
The treatment needs specialized care and physical and occupational treatments are most effective.

Lupus and Sjogren are a different story because of autoimmunity. Autoimmunity often starts in the GUT due to impaired mucous tissue (leaky gut) and 80% of the lymphatic system is situated around the gut. So what you might matter:
Have look at this link :
http://www.rebootwithjoe.com/juice-inflammation-and-auto-immune-diseases/

Hope this helps!

Nov 22, 2015 10:21 AM

Thank you for that information Doctor. It was very interesting. Especially about the Sjrogens. Can you explain the tests used to diagnose it. My doctors think that I do have it but I haven't been sent for specific tests as of yet.

Nov 22, 2015 10:29 AM

Thank you Dr. Fouradoulas. This information is indeed helpful.
Thank you Profiler. Your information was helpful and for sharing your brave story.

Peace ✌, Love 💚, Turtles 🐢, and Frogs 🐸
Gentle Hugs 🙅, A few extra Spoons 🍴, and Prayers 🙏 for us all!
(Sorry, could not find a pic of a spoon) lol

Nov 22, 2015 10:48 AM

LOL!!! Maybe they'll come up with one soon.. I love turtles and frogs! That's just too awesome.💕🙏🏻🌻

Nov 22, 2015 12:46 PM

That one seems to work. 🖕🏻

Nov 22, 2015 1:30 PM

The article is good. Foods can trigger or reduce inflammation, it's important to know. Juicing is nothing but fasting with juice and increases the body's self-healing abilities, it's known for centuries but not popular for the modern consumer.

Nov 23, 2015 12:42 PM

The diet sounds like the elimination diet. The fasting I did was with a bender not the typical juicer. The dr oz 3 day detox was good and it outlines everything for you with a list. The drinks are also in the cook book forks over knives. I was completely sick the entire 3 days. For the next two weeks I only ate foods that were in the drinks and kept up with 1 drink a day. I started adding back foods. It was a month long process at least. I never felt better and started adding meat back in. Mainly chicken breast and some beef. I still have stomach issues which are apparently stronger than the juice detox and probiotics

Nov 23, 2015 4:56 PM

I'm not sure, but I think I if he have Fibro as well. I haven't said anything to my Pcp yet. I suffer from terrible burning nerve damage in my pelvic region, IBS-D (IBS-C now due to opiates), constant exhaustion, insomnia, major depression (Bipolar2), severe anxiety, brain fogs, TMD/TMJ, IC, constant aching in my legs, arms, shoulders, neck, or hands/feet, needle pains in my shins. My back is hugely problematic. My neck, shoulder blades, and back are extremely tight and I can only handle light touches. I've had friends try to give me massages and it was so painful I was in tears and they had to stop.

Does this sound like it could be Fibro?

Nov 23, 2015 4:56 PM

I think I might have Fibro**

Nov 24, 2015 6:30 AM

Good Morning Dr. Fouradoules,
Good Morning Everyone,

I have a slight update. I saw my rheumatologist yesterday and it appears I've been mistaken about my dx. He told me that I have Chronic Myofacial Pain Syndrome and not Complex Regional Pain Syndrome. So I have Systemic Lupus, Sjogrens Syndrome, Chronic Myofacial Pain Syndrome, and Fibromyalgia.

So of course, my next question was what is the difference between CRPS and Chronic Myofacial Pain Syndrome? What is different about Fibromyalgia?

My apologies for the repeat questions. I just need a little clarity regarding these different diagnoses.

Nov 24, 2015 2:40 PM

Good question, shivahn. It can be difficult to distinguish myofascial pain from Fibromyalgia. Myofascial pain typically occurs in tense muscles like your neck or between your shoulder blades. It can be treated better through muscle training and massage. Trigger points can occur and be nasty but worry is usually the bigger problem. Take a look here https://www.painscience.com/tutorials/trigger-points.php and here http://www.osteopathy-chronicpain.com/myofascial-trigger-points.html
hope
this helps

Nov 25, 2015 10:14 AM

Thank you Dr. Fouradoules. This information was helpful.

Nov 25, 2015 8:38 PM

The second link didn't work because it connected to the first word of the next statement. Try this:

www.osteopathy-chronicpain.com/myofascial-trigger-points.html

Nov 25, 2015 8:41 PM

I have these tense upper shoulder and neck muscles with painful trigger points. I also have pain across the scapular areas. I wonder if it's the myofascial pain? 🙏🌼

Nov 25, 2015 9:05 PM

More than likely. I have been dealing with cmps as long as I have fms. That is what I had the "massage" for... breaking up the knots and getting lidocaine injections. The Dr would find the 8 worst ones across my shoulders, neck, base of my skull and down my upper back and inject those. Then he would dry needle some of the others. Then a week or so later came the massage. I did this every 6 months. It was the only thing that helped. I can't get it done now because I'm on Medicaid. It kept me from having to take a boatload of meds like I do now.

Nov 26, 2015 8:19 AM

How do you even get a diagnosis of FMS? No doctor has ever taken me seriously when I try to explain the pain I am in. I am 99% certain I have FMS but I can't get a GP to care.

Nov 26, 2015 10:45 AM

Why arent the Dr.s prescribing medical pit for Fibro patients yet? Is it thet are scared to or not enough understanding on legal medical pot. I for one with having fibro over 20 yrs now can say "it helps with my chronic pain" deep muscle pain,sensitivity to touch (skin). Works better the nuerotin and chlorzoxazone.

Nov 26, 2015 11:28 AM

Dr. Mark, I read an article last night that said endometriosis patients have a higher than average chance of developing fibro and thyroid disorders among other things. The writer questions if fibro and endometriosis could be autoimmune disorders. I had polycystic ovarian disease, endometriosis, and I have hypothyroidism and fibro currently. Do you think there is a correlation and could there be an autoimmune disorder factoring in to all of this for some people. It was the hysterectomy for endometriosis that triggered my fibro. The writer further postulated that fibro may be a broad umbrella of symptoms that may have many related disorders and triggers. She said therefore, instead of trying to lump everyone under the same treatment plan, each plan should be individualized to the patient, taking into consideration their history, concurrent disorders, and presenting symptoms. This makes sense to me as it seems science has been wrestling with how diagnose, if it is a diagnosis and what the best approach is. Does any of this hold water in your opinion?

Nov 26, 2015 11:49 AM

Bryn, you will probably have to see someone other than your GP because they don't have a specialty in pain/nerve disorders, etc, and mine have refused to dx anything besides "carpal tunnel pain, growing pains" but my neurologist dx most other things.

Nov 26, 2015 1:21 PM

Iann4963, I would be VERY interested in reading that article. Is it online or in a magazine?

Nov 26, 2015 5:06 PM

Thanks Ferretbandit- I just can't get my GP to refer me to anyone else :(

Nov 26, 2015 6:10 PM

@Iann, please check Shammargens post from yesterday titled auto immune. Links are there. Yes, endo is considered autoimmune from what I can tell.

Nov 26, 2015 8:32 PM

I would like to know why when it gets colder I hurt worse I can hardly move, the temperature in the house doesn't change , even now laying in the bed my body is throbbing to the point of tears. Why? What will help?

Nov 26, 2015 11:04 PM

Me too Elizabeth 1966, I have the worst trouble with that. I really felt like I was crazy.

Nov 26, 2015 11:14 PM

Elizabeth, I had a rheumatologist diagnose me with fibro after all others couldn't figure out what was going on. We're still going through trial & errors on medications. I was on Lyrica, hydrocodone, oxycodone, opana all at different times now I am on savella, tramadol & flexeril for flare ups & lumbar spasms..though those aren't working

Nov 26, 2015 11:34 PM

Dr.Fouradoulas,
I have suffered from fibromyalgia, cfs rsd, depression, hypothyroidism, sleep apnea and sleep disorders, IBS, and so much more but every time fibromyalgia is mentioned to some Dr.s they say fibromyalgia isn't real, it's a psychological problem meaning it's all in our heads. Is that true? It's frustrating because I know the pain I feel is real, just like anyone who is going through this, their pain is real. Please help with an answer. Thank you. ☺

Nov 26, 2015 11:37 PM

Amie, the article was online, let me see if I can find it again and I will post it here. Elizabeth, I have increased pain with changing seasons, especially colder temps. Most of the time when it is going to rain my pain goes way up too. About 3 weeks ago I was just miserable, the pain was way up, my brain wasn't working, I kept dropping things too. I commented to my daughter about it and she told me to go outside and look so I did. To the north there were grey, heavy, snowy looking clouds, to the south there were angry clouds stacked up on each other, they looked like serious rainstorm clouds. And here we sat dead center in all of it. Mystery solved!

Nov 26, 2015 11:40 PM

I agree lann4963, the temperature does play a huge factor in our pain. I am worse in the cold but when it rains and stuff I stay so very achy and miserable.

Nov 26, 2015 11:46 PM

I have found the change of seasons, barometric pressures / temperature, humidity, dampness, snow, rain are my worse triggers. I can usually feel the weather changes a day beforehand and like Irish girl stay very achy and irritable

Nov 27, 2015 7:26 AM

I am diagnosed in 2000, living in Holland. I think that it is a good idea to publish more articles on this subject. Most people react that "they too have occasionally some pain in their body", but it is so hard to explain! They don't feel the stifness, the constant pain and the tireness... Let alone that they need to plan stuff, they can do so many things, just when they feel like it...So more knowledge adn acknowledgement for our disease is welcome! And no, it is not in our head!
What I find difficult, still, is the balance between rest and being active (sports). I get mixed signals of doctors and therapists on exercising, that it is hard to choose what's good for you. Maybe you can pay attention to this subject in one of your dollowing articles, doctor? Thanks!

Nov 27, 2015 9:40 AM

Bryn, I had to switch GPs because the first few were horrible, most recent one is slightly better, except a language barrier that's hard to communicate through sometimes. Then again, sometimes pain is it's own language! 😅😰😁

Nov 27, 2015 11:22 AM

Irishgirl,
Yes fibromyalgia is controversial among some doctors because it cant be proven in the lab or imaging. Functional MRI show clearly that the pain is real. Look at my articles for more about that. But its a tricky syndrome and its really important not to get discouraged because of other opinions. You are the expert of you own perceptions and you know what feels real. And because its not easy to deal with it we have this group to share experiences and advice.
Honestly, many doctors aren't trained in treating chronic pain and would rather avoid it. Some even give narcotics for Fibro. Fibromyalgia scares them. Thats why you must become your own expert. Don't expect too much. I will post more about treatments soon.

Nov 27, 2015 11:26 AM

CJE75,
Thanks for the suggestion about exercise. I will try to cover it next.
By the way, isn't all perception in the head?

Nov 27, 2015 3:54 PM

I would like to see more information on "fibro flu" that seems to be the one I can not make the doctors understand. I read info on fibro and it talks about "flu like symptoms" what a joke! It is the absolute worst and I can say the only flu I can compare it to is the H1N1 I had a couple years ago.

I had a great week (ok it was a few days), best I have had in, well I don't remember. Then it seemed the pain came back and fibro flu from hell. I have been having dizzy spells, extremely nausea, when I lay down I have spinners, head ache, bathroom woes, low grade fever, exhausted more than normal, headache more than normal and so on. I know this is not real flu from experience and no one in my house gets it. If one doctor tells me to get the flu shot and it will help I will scream! I had the flu shot 2 years ago and got h1n1.

What causes the fibro flu to come on? If it is just a "pain" issue why the flu part?

Nov 27, 2015 8:05 PM

I often can't tell flares apart from the flu, except with the flu I usually feel like I'm dying (then again, the same things can happen wit flares)

Nov 27, 2015 8:14 PM

Ferretbandit I agree it is hard to tell the difference and they can over lap or follow each other. The definition I have come up with is the flare is when the pain is beyond its normal scope of pain and/or brought other pain friends. Now sometimes I can flare and not have the flu or only 1 or 2 flu like symptoms so I continue to just refer to it as a flare. The fibro flu is full blown flu symptoms which reminds me of when I had H1N1...so sick I can't recall day/time, increased sick symptoms that have now debilitated me to I can't move even if I didn't have pain. Wish I could describe it in words better. I know what I mean lol.

Nov 29, 2015 1:07 PM

Dr. Fouradoulas, yes, I agree that perception is in the head, but it is just that people think that you imagine your pain. Believe me, i'd rather imagine other things... :-)

Nov 29, 2015 2:16 PM

shemmagren,
Flu-like symptoms mean that there is fatigue, aching and tenderness all over the body like in a flu. But there is no connection to viruses in Fibromyalgia. Something similar is seen in chronic fatigue syndrome. The the mechanism might be similar, sensitization in the nervous system. Thats why blood tests remain negative. Otherwise I can't give you an explanation for this up and down of symptoms. Have you ruled out food triggers (gluten, allergies) or other lifestyle triggers?

Nov 30, 2015 5:26 PM

I have ruled out food allergies and gluten. It seems to be some crazy cycle...pain, hives, itching, flu symptoms then back to my normal pain level only for the circle to start again. I know one of my pain triggers is hormones but the rest I can't figure out. the dermatologist, neurologist, rheumatologist and my PCP can't explain it either. From reading on FMS it seems to fit the standard symptoms only I have tracked mine and found a pattern.

Dec 01, 2015 11:07 PM

I know it's late, sorry. I have nerve pain that on most days effects my for arms, hands, fingers, lower legs, feet and toes....some days it's literally from my head to my toes. I hate it. My practitioner says it's from the fibro, My neurologist says it's from my RA but my rheumy sent me to him because he doesn't know why I have this trouble or where it came from, which leaves me very confused. Three years ago I was diagnosed with RA. Since then it has just been a whirlwind of diagnosis's. Sjögrens, fibromyalgia, myofacial syndrome, cervical spinal stenosis with osteoarthritis,multiple bulging discs and sciatca, then came a DX of small fiber peripheral neuropathy, then IBS. I think that has the just of it. Anyway, I don't understand why all of this is happening so fast! And this nerve pain is by far the worst of it all. My fingertips and toes feel as though they are being held to an electric burner on high. And when it's everywhere, I can feel my whole body pulsing with pain! Any thoughts? Is it typical for this kind of pain to happen?

Dec 02, 2015 2:59 AM

Has anyone heard of this? Sounds much better than medications.

http://thespiritscience.net/2015/11/30/fibromyalgia/?utm_campaign=shareaholic

Dec 02, 2015 11:16 AM

Interesting and strange article. But I'm not sure I believe it, especially not until I see the whole study report. It sounds almost too good to be true. Question: how are people without insurance going to pay for something like that? I'm sure it's very expensive. And I doubt my insurance would cover it. More studies are needed.

Dec 02, 2015 1:55 PM

Flappy I agree more studies are needed. I was wondering why just oxygen wouldn't help or would it. I looked it up and there is a place near me who does this and prices looked like 150.00 per treatment. Yikes! They use it for other similar health issues and thier website explains more on the benefits.

Dec 02, 2015 3:35 PM

Yeah, even at $150, if you need just 10 visits it's $1500, unless insurance covers it. Would that be wonderful or what... To be cured! Yeah, but... 🙏🌼

Dec 03, 2015 12:00 PM

Oh I know flappy I was just excited about any possibility of something actually helping.

Dec 03, 2015 8:34 PM

I'd volunteer as a guinea pig on this one! 🙏🌼

Dec 03, 2015 11:31 PM

It was told by my fibromyalgia doctor that they are doing a study and their finding out a lot of women in the medical field are being diagnosed with fibromyalgia and they think its from the hepatitis B vaccine. I got the vaccine + 19 94 and was diagnosed in 1996 I was in College. I've been battling this syndrome for the last 24 years.

Dec 04, 2015 10:34 AM

K Gary that is interesting. I am not in the medical field and have not had a hep b shot but have fibro

I have heard talk other serious conditions from vaccines but it always seems to come out vaccines are safe. 20 plus years ago there was one about vaccines I think polio sent to Africa caused aids. I have often wondered if it is a cover up about vaccines over all.

Dec 04, 2015 1:44 PM

I've heard that Tylenol might be the actual problem, not the vaccines themselves. I guess there's another country where vaccines are required for all citizens, but Tylenol is treated the way the US views Morphine: only special circumstances. They don't have many of the issues with vaccines, or so I've heard.
It's hard to say what's fact and fiction, especially since I haven't lived there, it might just be a rumor.

Dec 19, 2015 5:56 AM

I have fms i have it for 9yrs & it is getting worse i can hardly walk now without support going up stairs no way in constant pain 24-7 & also very hard to look after myself i am takin very bad as i was always such an independent person.

Dec 20, 2015 3:49 PM

can fibro come from being addicted from alchol drugs from bio mother

Dec 20, 2015 3:50 PM

what to do get your engery back

Jan 20, 2016 5:07 AM

As of November 2015, Fibromyalgia is a recognised disorder and no longer a syndrome according to the diagnostic manual of medical disorders. I think all old articles should be dismissed from this group.

Jan 20, 2016 5:09 AM

Also, more information that Delves into the mechanics of this disorder. We as a group deserve to know everything there is to know. All the medical terminology, statistics, etc.

Jan 21, 2016 12:24 PM

Thanks for the feedback. In a medical sense, a disorder refers to an abnormal mental or physical condition. A syndrome is a cluster of symptoms and implies an unknown cause. Both can be used.
We will further expand the info on FMS but focus on new and specific topics. More general info you can find on sites like https://fibroguide.med.umich.edu/aboutfibroguide.html

Dec 23, 2016 3:47 PM

Dr. Ginerva Liptan has the only exclusive fibro practice in the world. She offers the latest in fibro research & freseherself. Her

Dec 23, 2016 3:54 PM

Well I don't seem to be able to comment on this thread. Exciting new research Fibromanual.com.

Dec 24, 2016 8:17 AM

What more specific topics have you address. I started this app just this month so have some catching up to do. Previous posts of mine sounds so defensive which I think the were. Just been a long journey with this fibro. Would like all to benefit from what Dr Liptan has accomplished it's so amazingly right on for fibro. Dr. Marc? Have you had a chance to check out her research?

Dec 24, 2016 8:21 AM

Lots of other types of chronic pain but her research and treatment plan may crossover. Like magnesium & muscle twitching/RLS (see "Twitching" post.

Apr 04, 2018 12:28 AM

Hi to all,

I went to have medial branch block in my lower back last weds at the Pain clinic I was given 8 injections in my back at the sides of my Spine on both sides.

And 2 days later in So much pain so back to the Zomorphe
For Pain Relive.

I never had no Pain after I my 4 children in till I had my 5 child husband's choice Not Mine will never get over it so Selfish.


Dolphin5.

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