New here and confused

akabore

New member
Joined
Oct 12, 2022
Messages
5
Reason
DX FIBRO
Country
CA
Hello,


I am excited to have found a community because I am at lost trying to figure this all out.
It has been at least 8 years of constant and persistent doctor appointments until few months ago they
Said I might have Fibromyalgia. They are not even definitive about it!

It started with a stomach ulcer that lead to IBS symptoms and general fatigue that I could not do much about
although I tried so many solutions. Then I started getting even more fatigue, I am talking by the end of the work day
I wanted to just drop on the floor at work and cry. They said I was stressed and I replied being sick is my stress not
other way around. Given that I was depressed all this time as well because O was sick constantly and in my twenties
but unable to do much of what I want. I survived with massages, acupuncture and chiropractor sessions.

However with years, I have developed persistent back, shoulder and neck pain that is just unbearable and even opioids
aren't doing it (and I don't want to depend on that). My knees suddenly started hacking and I could barely go up and down stairs.
It seems more body parts are being added to my list of pain and it is travelling around.

Now, I am working part time because of the brain fog, the fatigue and the pain and I am only in my mid thirties!
I am riddle with body pain that keeps me up at night, I get headaches, migraines, digestive issues, muscle stiffness (basically I am a stone!),
brain fog, I forget everything

1- How to I get a definitive diagnosis from my doctor?
2- Does that seem like fibromyalgia?
3-What works best with these symptoms for you?
4-I started Cymbalta for pain for months and I do not see any difference in my pain. Have you tried and did it work?
5-My doctor prescribed physiotherapy and psychology and I mostly feel like massages and acupunctures works best
- have tried physio and psychology with a positive outcome?

I apologies for the long post but I appreciate you reading till here and cannot wait for your feedback.
Thank you
A- from CA
 

cookiebaker

Very helpful member
Joined
Jul 26, 2022
Messages
662
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
you dont have to apologize for long posts here.. they seem to be a regular occurrence, LOL. (and we dont look down on them, either)

sounds like you have a lot going on.. including many things associated with fibro.. but, these things can also be associated with other illnesses that are quite serious..
For me, the real diagnoses process started when i flat told my primary that I should not be feeling this bad at my age (and I am a fair bit older than you) and I was sick and tired of feeling sick and tired! that was when things got kicked into high gear for me...
I was tested for a lot of different things, including Rheumatoid arthritis, Psoriatic arthritis, Lupus, MS, and Lyme disease... Have had pretty much every joint x-rayed (with multiple views of each), and several MRIs looking at certain areas.
I do have osteoarthritis in my lower back/pelvis, neck and hands - bad enough to be causing issues.. but that does not explain the muscle/tendon aches and pains i feel all over.. especially in the legs..

Unfortunately, with most doctors, fibro seems to be more a diagnoses of exclusion - ruling out all these other things... when in fact, it can, and does exist side by side with many other problems.

If you scroll all the way down to the bottom of this screen, to the blue bottom bar, then click where it says "Home" - that will take you to the main home page of this site and there is an online questionnaire/test you can take to confirm fibromyalgia... but do keep in mind that you should still have other things ruled out because of the comorbidity issue

All of that said, there are things you can try to help reduce your symptoms and give you back at least some of your life joy. It does take time, however, so be patient and willing to try. Sunkacola has some great advice on things to try here - give a read thru, and see what you think.
 

akabore

New member
Joined
Oct 12, 2022
Messages
5
Reason
DX FIBRO
Country
CA
Thank you very much -I really appeciate your feedback. Took the test and it is a yes and read the management suggested by Sunkacola and I feel like I have a long way to go because of me having these symptomes for years. Next step Visit a fibro doc in my area and see where it leads.
 

cookiebaker

Very helpful member
Joined
Jul 26, 2022
Messages
662
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
Next step Visit a fibro doc in my area and see where it leads.
if all they offer you are pain drugs, walk away.. Pain meds really do not do much to help us.

That said, I also have other issues (neuropathy related to arthritis) and am going to be trying a course of low dose naltrexone to see if it helps me - have tried most of the others that are prescribed for nerve pain and they either made things worse, or had unwanted side effects... i guess we shall see...

for a lot of us, dietary changes have had the biggest impacts.. supplements - good quality ones - are also often helpful, but you need a good baseline - blood chemistry, vitamins, minerals, hormones, etc - to figure out where to start.
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,424
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Hi akabore, The thing is there is no such thing as a definitive diagnosis of fibromyalgia. Not really. You can get the diagnosis but since there is no test that proves it one way or another, how "definitive" it is is pretty debatable in my opinion. Also, fibromyalgia being an umbrella term that they slap on you if they cannot find something else that explains your symptoms, and since there is no cure and not even a treatment that works for everyone, the diagnosis is only useful for writing down on forms.

If you dedicate yourself to working toward a full understanding of your body and what works for you, you will see an improvement in your life. I can't say you will have no pain or less pain or better sleep or any one thing. But there will be some improvement somewhere.

And cookiebaker is right about the pain drugs. Don't go there.
 

MissNeverWell

New member
Joined
Oct 15, 2022
Messages
3
Nice to meet you, akabore. I'm new here as well. I can relate to many of the the symptoms you describe that, by attending educational sessions and conferences many years ago, have been identified as fibromalgia-based. However, at the same time, it is important not to assume that every symptom you experience is fibromyalgia, or else you can overlook other conditions that need to be treated. This is what I summarized many years ago from a variety of sources of information:

Fibromyalgia (fibro - fibrous tissue such as tendons and ligaments; my- muscle; algia - pain) is a syndrome, or group of symptoms that affects many parts of the body. It is chronic but not degenerative, and symptoms and their severity vary depending on the individual. While the exact cause is unknown, the onset of fibromyalgia (which occurs at approximately in the 30’s age range, although children can get it too) is believed to be a response to trauma (either physical or psychological) or to a virus, such as Epstein Barr, mononucleosis, rubella or red measles and a strain of HTLV 2 (a retrovirus).

Fibromyalgia is characterized by widespread pain and fatigue, as well as a sleep disorder, imbalance in some body chemicals and digestive problems. The syndrome is identified by 18 tender points on both sides of the body which are painful when pressed, and by widespread pain for at least a three month period. It does not reveal itself in x-rays, bone scans or standard blood tests. Fibromyalgia affects blood flow, sleep, muscle use, brain function and transmission of pain signals. Generic symptoms of fibromyalgia include:

Widespread Pain
This pain is diffuse, migrates and is hard to describe and locate. It spreads throughout the musculoskeletal system (muscles, tendons and ligaments) in several regions of the body or from head to foot, and is usually most severe in frequently used areas of the body. The pain can be experienced in a variety of ways - aching, burning, gnawing, smarting, sharp, tingling and throbbing. Stress, weather, too much activity or inactivity may cause a flare-up.

Fatigue
Exhaustion can be persistent at a low or moderate level, or can occur spontaneously and severely. There is a general feeling of weakness and impairment of muscle use.

Morning Stiffness
Stiffness upon awakening is caused by gelling of the tissues after the body has been in one position for an extended period of time. This stiffness takes a while to dissipate, and may last all day.

Sleep Disorder
People with fibromyalgia lack restful, restorative sleep due to intrusion of alfa waves (indicated in a waking state) on delta waves (occurring in deep sleep) during non REM (rapid eye movement) sleep. It is during delta sleep that the growth hormone responsible for growth and repair is released, as well as chemicals needed by the immune system. Other sleep disturbances may occur, including sleep apnea (interrupted breathing), nocturnal myoclonus (spasms in arms or legs) and bruxism (teeth grinding).

Other Symptoms/Conditions
Other health problems that may or may not be present include chest pain (caused by costochondritis - pain in the chest wall); muscle spasms; tension or migraine headaches; photophobia (sensitivity to light); visual problems/eye pain; dizziness; clumsiness/dropping things; numbness and tingling of the arms, hands legs and feet; feeling of swelling; high or low temperature; premenstrual syndrome; irribable bowel syndrome; irritable bladder syndrome; environmental hypersensitivity (noise, light, cold, heat, chemicals, scents, toxins); bruising; itchy skin; mottling of the skin or rashes; dry eyes; dry mouth; hair loss; sore throat; swollen glands; tender lymph nodes; and lack of endurance.

Accompanying mental and emotional difficulties include confusion; memory blanks; word mix ups; difficulty concentrating; anxiety; panic attacks; mood swings and irritability.

Research has come up with the following findings:

Imbalance in Neurotransmitters
There is too much substance p (a pain transmitter); too little serotonin (which influences pain levels, dilation and constriction of some blood vessels, certain hormones, regulation of the immune system and emotions, and may be the prime cause of the sleep disorder); lower levels of amino acids (building blocks for protein); in particular, tryptophan, the metabolic precursor to serotonin). Certain amino acids are lower in women than in men, decreasing before menstruation and during pregnancy, which may explain why women are more likely than men to get fibromyalgia.

Oxygen in the Tissues
Muscles and other tissues suffer from hypoxia (lack of oxygen), partly from faulty control of blood flow at the cell level. Oxygen and nutrient materials are underutilized, and waste materials are not properly flushed out.

Immune System
Although the number of natural T-killer cells are normal, their activity may be lower than normal. There appears to be a link between the immune system and the sleep disorder.

Typical treatment approaches focus on medication, exercise, physiotherapy and counselling.

The common medications are low dose tricyclic antidepressants (e.g. amitryptyline, Elavil); cyclobenzaprine (Flexeril, a muscle relaxant) and Prozac to promote seep and reduce pain. These are not recommended for long term use because any drug can damage the body over time. Also, medication can have diminished effectiveness, requiring more of the drug to achieve the desired effect. Side effects of tricyclic antidepressants are fogginess of the brain, weight gain, dry mouth, and short term memory loss. Prozac can cause insomnia and agitation. Pain killers work better if they are taken regularly throughout the day so that there is a constant level of the drug present in the blood. High doses for extended periods of time can damage the stomach, liver or kidneys.

Exercise is recommended for at least a few minutes a day to combat deconditioning of the muscles brought on by fibromyalgia. This should be introduced gradually and involve stretching, strengthening and aerobics. Stretching alleviates the tightness and stiffness and improves flexibility of the muscles. Strengthening the abdominal muscles controls back pain, and weights can be used at reduced levels to strengthen the arms, neck and shoulders. Aerobics such as walking, cycling, swimming and dancing promote cardiovascular conditioning and delivery of oxygen to the tissues. Physiotherapies such as acupuncture, infrared heat, massage, spray and stretch, TENS machine, ultrasound and laser therapy may be beneficial, depending on individual needs, in easing pain, improving mobility and decreasing muscle tightness.
Other therapeutic approaches include biofeedback, distraction, counselling, psychotherapy, relaxation, stress management and rest.

Fibromyalgia patients may fall into a cycle of pain, disability, depression and more pain. To the observer, they look well; there are no visible manifestations of the syndrome. While many patients are only mildly affected and can function normally given the necessary adjustments, others are debilitated by the condition, so that employment, household and social activities may be affected.
 

sunkacola

Moderator
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Country
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at the same time, it is important not to assume that every symptom you experience is fibromyalgia, or else you can overlook other conditions that need to be treated.
Greetings, MissNeverWell. The above is certainly true, and is important. It is something several of us remind ourselves and others of often, as it is easy to forget.

Welcome to the forum, and we appreciate your presence and willingness to impart information. I notice your post contains some misconceptions which are probably a result of the information having been gathered many years ago, as you say. Newer information is available so I will add that to your comments.


the onset of fibromyalgia (which occurs at approximately in the 30’s age range, although children can get it too) is believed to be a response to trauma (either physical or psychological) or to a virus, such as Epstein Barr, mononucleosis, rubella or red measles and a strain of HTLV 2 (a retrovirus).
Fibromyalgia can occur at any point in a person's life, and is not always a result of trauma or former illness, although that is true some of the time. At this point it is no longer believed to be always a response to any of those things, although for some people there is correlation, and possibly causation.

The syndrome is identified by 18 tender points on both sides of the body which are painful when pressed
This diagnostic tool has been thoroughly debunked and due to its inaccuracy it is never used any more by doctors who are in the know about fibro.

is usually most severe in frequently used areas of the body
not necessarily true, although overuse of the body can exacerbate these pain

Fibromyalgia is characterized by widespread pain and fatigue, as well as a sleep disorder, imbalance in some body chemicals and digestive problems.
Not all people with fibro will exhibit these symptoms, except for widespread pain and usually fatigue. For many there are no imbalances chemically or digestive issues.

There is a general feeling of weakness and impairment of muscle use.
While some fibro people experience this, not all do. Also, this can be overcome by exercise designed to strengthen muscle tissue.

Morning Stiffness
Stiffness upon awakening is caused by gelling of the tissues after the body has been in one position for an extended period of time.
No all have morning stiffness, of course. In those who do, the stiffness can occur whether the person remains in the same position while sleeping or moves around a lot. I, for instance, am sometimes stiff or in pain in the morning and sometimes not, and I am not a person who ever stays in one position while sleeping.

Sleep Disorder
People with fibromyalgia lack restful, restorative sleep
Not always. Many people with fibro have trouble sleeping, but not all, and there are many different forms of sleep disorder, with many different causes not necessarily related to fibro.

mbalance in Neurotransmitters
There is too much substance p (a pain transmitter); too little serotonin (which influences pain levels, dilation and constriction of some blood vessels, certain hormones, regulation of the immune system and emotions, and may be the prime cause of the sleep disorder); lower levels of amino acids (building blocks for protein); in particular, tryptophan, the metabolic precursor to serotonin). Certain amino acids are lower in women than in men, decreasing before menstruation and during pregnancy, which may explain why women are more likely than men to get fibromyalgia.
This is one of the things being researched, but imbalance in neurotransmitters has not been proven to be a cause of disorders in fibromyalgia.

And.............everything you say about medications, exercise and so on is spot on.

I am only mentioning these things and correcting them because it's important to have up to date information presented in the forum, and because I figured you would want to know updated info on the things you have found through research. Research, especially in a scientific or medical field, is always evolving and changing as more information comes to light.

Again, welcome to the forum and I hope that you feel your time here is helpful to you and informative. We are all here to help and support each other.
 

Shanti Shanti

New member
Joined
Oct 12, 2022
Messages
4
Certainly I don't think refreshed sleep is a key indicator. I found it reassuring to know that FM is not the only disease of exclusion. Other very common diseases ARE so try not to get caught up on needing confirmation. The more you speak with people in this community forum, the more you might either relate or totally not relate. In my opinion, that's the best indicator. About sleep, I wake up feeling good for the most part. Mornings are good for me. However, once the afternoon comes (sometimes earlier), I have to lie down to rest and/or sleep up to HOURLY. Do the dishes= rest. Shower = rest. Vacuum = rest. I do this about 5 times a day. So... nothing to do with morning refreshment, but I'm pretty sure most would say that's a sleep issue, lol!
 

Shanti Shanti

New member
Joined
Oct 12, 2022
Messages
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I completely relate to your post :) I'm new, too, and this past year is when I really started pressuring my doctor for tentative diagnoses. He's of the dismissive type. I've decided that I will take it upon myself to hound him with the most current research on this disease. Rambling! I just wanted to say that I too got SICK AND TIRED of the unbelievable unexplained full-body pain, digestive issues that land me in the ER, 3-6 naps or rest periods a day and so on and on and on....... My symptoms started from age apx. 10 and I have been dismissed by doctors for decades. Once I started researching fibro, hopping on forums and talking about others, etc...... I knew this is where I belonged :) Thanks for listening!
 

akabore

New member
Joined
Oct 12, 2022
Messages
5
Reason
DX FIBRO
Country
CA
I experience both situation, waking up feeling already drained or waiking up feeling rested but mostly the unrested and yes, I often taking napes at work and I crash when get home after work.
 
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