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How do you cope with having FM..i feel so lost
7 Replies
redhead1069 - January 25

Hi...I was just recently diagnosed with FM. I am 22 years old and pretty sure the FM started when i was 18.I also came across some info that makes me believe i have narcolepsy and my dr agrees so im going to a sleep specialist in a week. Does anyone else have narcolepy and FM? What advice do you have?

I have been having a hard time dealing with this. I feel like i am ancient and about to die most of the time. I feel like i have no control of my body. I cant sleep when i need to because of my leg or my ankles or my shoulder ect...Then i can't stay awake when i need to like driving, during class, at work, or studying. Im always tired of being memory is starting to go at a noticable rate..i cant eat certain foods because it makes me so tired...then all these drugs they have to help this make somethings worse...i feel so lost and alone..i know a ton of people have FM but i have yet to encounter someone in person...when i talk to anyone about this i feel so im making it all up in my head..and im given advice that makes me just want to slap the person and yell at them for thinking i havent tried that and that its just that simple to fix it...i have to much frustation,anger,sadness, and shame. I have nothing to direct it to...i can hate myself but what good does that do? so full of fear for my future...if i hurt this my now what will 3 years from now be like?..i dont even wanna afraid im never gonna graduate college..all my symptoms seem to get in the way some inability to focus or remember anything is really starting to get bad and i need to be able to do those. I hate that no matter how hard i try i cant make myself do what i need me to so sick of all of this...i wish i could just give up...but that would be death and i do not like that option..I wanna live life but not like this...i just wanna break down and cry when i think about it.

How do you deal with this? With having to be on drugs to be ok..with the doctors and the people who care about you that just dont get it...i feel so crazy...please any advice would be helpful...thank you for taking the time to read my rant...



I am so sorry that you are feeling this way. I was about 26 when I was diagnosed with FM. But I had this constant pain in my back and just an overall tired feeling since I had my child in 2002.

Do you have a good support system at home? Family and friends?

It can be hard for people to understand how we feel and what we go through when they haven't read about the FM. I would read and get as educated as possible on this condition. It is hard to battle something that you aren't prepared for.

What medication does your doctor have you on? (if you don't mind sharing)

I take Celexa (for depression), Ativan (for anxiety), AMbien (for sleep, as sleep is CRUCIAL for this condition) and Morphine Sulfate XR for the pain that follows me EVERY DAY OF MY LIFE.

Hang in there and KNOW that you are NOT alone. Keep me posted on how you are feeling. We are always here for you! Just a note away!



slb71 - January 25

Redhead1069 - I too am so sorry for what you are going through right now. I can't even imagine what it would be like for me to go to school with the way I feel. Good for you for having the strength to get up everyday and go to classes and study!

I know the feeling of those around you not understanding what you're going through even with a good support system. Just remember nobody knows how FMS feels until you have it yourself. I try to put myself in their shoes because 10 years ago if someone was trying to tell me what they were going through I would not have understood it either.

You are NOT crazy and everyone on this board DOES understand. Are you taking an anti-depressant? That is definitely of benefit to those with FMS.

I noticed you said you feel shame. There is nothing you did or didn't do to have FMS. So with all the other feelings you are having right now please don't feel ashamed. I feel like I am ancient most of the time also. The memory issue could be fibro-fog. I experience that myself - more often than I'd like!

I am on cymbalta for depression and nerve issues, lamectil for muscle twitches, restoril to help sleep, B-12 injections because of a deficiency and pain meds. Sometimes the meds help and sometimes they don't and you're right, sometimes the side effects of the meds do make some things worse.

Keep your head up! I have a feeling you are stronger than you give yourself credit for!

Keep in touch!


Fantod - January 26

redhead1069 - Welcome to the board!

I have had Fibromyalgia (FMS) for almost 4 years but I do not have narcolepsy. However, sleep issues are really common among people with FMS. I am going to give you a crash course on FMS so you will have a better grasp of this illness.

Fibromyalgia (FMS) is a disorder of the central nervous system that causes widespread, chronic pain. The mechanism that causes it is not understood. FMS is correctly referred to as a syndrome. There is no cure but it can be managed by certain classes of prescribed medication. OTC remedies do not work for the type of pain associated with FMS.

Fibromyalgia is recognised by the Centers for Disease Control, the National Arthitis Foundation and the World Health Organization. It is not unusual for FMS patients to have friends or family members who will not accept this diagnosis. Pain is subjective and many people mistakenly think that a pill will fix everything. If it is not tangible like a body cast than it must not exist on a daily basis. You can go to the National Arthitis Foundation website and use the "search" function to find the section on FMS. Send a link to family members and friends. Go online to Amazon and purchase "Fibromyalgia for Dummies." Like all of the dummies series it contains good, basic information on FMS. Read it yourself and pass it around. Knowledge is power.

If you want to find a support group in your area, use Google. Google fibromyalgia support group and the name of your metro area to see what pops up. You could also consider finding a couselor who specializes in cognitive behavioral therapy to help you develop some better tools for coping. You sound very depressed and I would like to gently suggest that you follow through on my suggestion. Call your local hospital and ask for the physician referral service. They should be able to assist you. Or, as a student you must be eligible for some help through your school. And, you can also ask for extra accomodation from your college to get your assignments done. Rome was not built in a day. You can get your degree, it just may take a bit longer. This is one of the hardest lessons to learn when living with FMS.

One of the reasons that you are so tired and sore is due to lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. I'm not sure how narcolepsy figures into all of this. But, you should be on a sleep aid like Amitriptyline to help you sleep.

There are three prescribed medications used to treat FMS. You have probably seen the ads on TV for Lyrica. One of the most common side effects from this drug seems to be rapid weight gain. This does not happen to everyone but doctors don't seem to be proactive about changing meds when this problem becomes apparent. Cymbalta is an antidepressant that addresses both the pain and depression that usually accompany FMS. Savella was approved for use in the USA in March of 2009. It has been used in Europe for decades.

Diet is extremely important. You should avoid anything containing an artifical sweetner including Splenda like the plague. Deep fried foods, lunchmeat and red wine (nitrates) will all probably make your pain levels worse. If you require a sweetner, use something made from the nontoxic Stevia plant like Truvia or Sun Crystals. You can find them in the baking aisle at the grocery store right alongside the other sweetners.

I can understand why you are unable to focus. Lack of sleep and a high level of stress would make anyone forgetful. I honestly think that things will settle down considerably once your sleep issues have been sorted out. I do use a supplement recommended to me by my nutritionist for memory. It is called "phosphatidylserine." An online vitamin company called Puritan's Pride (we can not post links) has good sales on it - they call it "Neuro-PS." In addition to your prescribed medication you could also try Curamin for breakthrough pain. This is a spice in a highly purified form that comes in capsules. It is a very effective pain killer which I use twice a day for underlying pain related problems. If you have cramps and muscles that twitch, Malic Acid is helpful for that. Any decent healthfood store should be able to help you with these items. make sure that you understand how to use these supplements and any risks associated with them.

It takes a very strong person to come on a public forum and post how badly they feel. You are not alone in any of this. We all have our ups and downs with this infernal syndrome. Do you have a computer with a microphone? You also join us on Skype. See the posting about that for more information. Things are going to get a lot better once you'e been to the sleep clinic. In the interim, it would help us to understand your situation more clearly if you tell us what drugs you are currently using or have tried. Hang in there - we are all pulling for you. Take care and God Bless.


reychel - January 27

Dear redhead1069,

I am so sorry to hear that you feel so alone. I have fibro since I was 12 years old ( I am 28 now ). So I do understand your frustration and while reading your post I notice that most if not all applies to me to.

I also get tired of being tired. Sick of having pain all the time... Fortunately I have a wonderful husband who has a lot of patients with me.

I usually don't say this ( you can read all my posts ) but if you wanna a friend ( a web friend ) I will be happy to hear you. Sometime all we need its to have someone to listen to us and be sympathetic.

if you do, let me know and I will send you my email address. I like to use the msn live IM

take care


Stacey373 - January 27

Hi redhead1069 - we all know how hard and frustrating this illness can be. Some days it feels like the life has been sucked out of my body. I just recently started back to school and right now I think I'm on an adrenaline high so I'm feeling okay. I know that once the "high" is over, I am going to be hurting and having a hard time dealing with all of this. Each day I have a little less energy and I'm getting a lot more tired.

I'm also worried about the future and how I will feel and what happens if I get worse. But you have to remember, with this disease, you HAVE to take it one day at a time. You will only make yourself feel worse if you constantly worry about tomorrow. I have learned that I can't control this and I sure as hell can't change how I will feel tomorrow....but I can appreciate today and the goals I was able to accomplish (no matter how small they are)

As for your family and friends understanding....I think that is constantly a work in progress! I've dealt with the pain and problems for YEARS, was diagnosed 2 years ago, and in the last year really started to try to understand all of this myself.(and explain it to my family) and my husband STILL doesn't completely understand even the basics of this illness! Just the other day he was asking me why I am so tired all the time! Really?!? do I REALLY need to explain all of this to him AGAIN?!? LOL honestly, I don't think anyone can truly understand unless they live it every day.

My best advice for you is that you have to learn to live WITH this illness, instead of trying to fight it. Which means not pushing yourself and listening to your body. And you have to find it in yourself to be positive and appreciate all the little things you can do. And don't be so hard on yourself if you can't do something or keep up with your friends.

You might also want to think about seeing a counselor.....someone you can talk to and can give you the "tools" to deal with this. Or you can email one of seems to be a little easier now that I have found some good friends on here that I can talk to privately (Thank you Toots, Fantod, and Noca!)

Take Care, Stacey :o)


axxie - January 28

Hello there redhead1069

Welcome to the forum, where you can be yourself, complain, give some advice or seek advice.

Here's my two cents, if if makes you feel any better, what Fantod has given you is dead on as advice etc.

I have fibro also, and after a few years I was about to control the pain and sleep, which helped me, and I've gain my life back, minus a few hiccups along the way. It's not easy having it and then figuring what to do to nurse yourself back to health. The one thing I can say, is, remember you are not alone and you also can gain the upper hand. So what is fibromyalgia.....

What is Fibromyalgia?
Pain, Fatigue, Fibro Fog & More - All Part of Fibromyalgia Syndrome

Fibromyalgia syndrome is a chronic condition that causes intense pain in various places around the body, including muscles, connective tissues and joints, as well as a host of other symptoms. It affects more than 6 million people in the United States.

Doctors classify fibromyalgia as a syndrome, which means it has a group of signs, symptoms and characteristics that occur together.

To make a diagnosis, doctors usually rely on signs and symptoms alone. Complicating the matter, symptoms vary widely from person to person and often, as do their intensity.

Symptoms of Fibromyalgia
People with fibromyalgia frequently hurt all over and feel exhausted all the time. Those symptoms often force you to seriously limit your physical activity. It's also common to have problems concentrating and remembering things. A lot of people with fibromyalgia have symptoms so severe that they have to quit or modify their jobs.

Because fibromyalgia is frequently misunderstood, family, friends, co-workers and even medical providers may not believe the person is actually sick. A proper diagnosis often takes months at the very least, I found people on this board had it for years before they where diagnosed.

Keep in mind that the signs and symptoms vary widely from one person to another. Some people have only a few, while others have many. The intensity of symptoms is different in everyone as well, ranging from mildly annoying to highly debilitating.

Common symptoms of fibromyalgia:
Widespread pain
Chest pain
Morning stiffness
Sleep disorders
Cognitive or memory impairment (“fibro fog”)
Abdominal complaints
Frequently, people with undiagnosed fibromyalgia don't realize that a host of secondary symptoms are related to the pain, fatigue and other primary symptoms. Keeping a detailed list of symptoms can help your doctor make a diagnosis.

Additional fibromyalgia symptoms include:
Painful menstrual cramps
Vision problems
Nausea and dizziness
Weight gain
Chronic headaches
Skin problems
Muscle twitches and weakness

These lists include the most common symptoms. For a complete symptoms list, see the Monster List of Fibromyalgia Symptoms.

Fibromyalgia Treatments
While a lot of fibromyalgia treatments are available, you'll likely need to experiment with different options before you find what works best for you.

Fibromyalgia treatments include:
Prescription drugs
Complementary/alternative treatments, including massage and physical therapy, chiropractic, and acupuncture
Vitamins and supplements
Moderate exercise, but only if done correctly

Lifestyle changes, including diet, stress management, and pacing
Every case of fibromyalgia is different, and no treatment works for everyone. You'll probably need to work closely with your doctor to custom tailor a treatment regimen that helps you become more functional. Many people benefit from a multidisciplinary approach, which involves several healthcare providers.

Prognosis for People With Fibromyalgia
Fibromyalgia is a chronic condition. While some people do experience long remissions, no one who's had fibromyalgia can truly say they don't have it any more.

As for the progression of the illness, it's hard to say whether your symptoms will get better or worse with time. Because fibromyalgia isn't degenerative, its course isn't clearly established like it is for many diseases.

Some experts say about a third of us will get worse, a third will improve significantly, and the remaining third will stay about the same. Some studies have linked early diagnosis and treatment to better long-term outcomes, but other than this it's unclear what role treatment plays in the progression, or lack thereof, of fibromyalgia.

Fibromyalgia & Overlapping Conditions
As if all this weren't enough, several other conditions frequently go along with fibromyalgia. Researchers aren't sure whether one condition leads to another or whether they have related underlying causes. Becoming familiar with the symptoms of these disorders can help you determine whether you have more than one.

Overlapping conditions include:
Chronic fatigue syndrome
Irritable bowel syndrome
Temporomandibular joint syndrome (TMJ)
Multiple chemical sensitivity
Myofascial pain syndrome
Restless leg syndrome
Costochondritis (chest pain)

History of Fibromyalgia
Doctors coined the term fibromyalgia (fibro –- meaning fibrous tissue, my -– meaning muscle, and algia -– meaning pain) in 1976, but it wasn’t until 1990 that the American College of Rheumatology developed diagnostic criteria. While muscle pain is the primary symptom, research found that nothing is wrong with the muscles themselves. For a time, researchers thought it could be an autoimmune disease, such as lupus or rheumatoid arthritis. Now it’s widely believed in the medical community that a malfunction of the central nervous system (called central sensitization) causes fibromyalgia, leading to new research into treatments and new hope that fibromyalgia will be not only more treatable, but perhaps even curable.

To date, three drugs -- Lyrica (pregabalin), Cymbalta (duloxetine), and Savella (milnacipran) are FDA approved for treating fibromyalgia, but other drug trials are in the works.


jfc - January 29

I unerstand exactly wha you are going through. I was diagnoised a yr ago with FM. I got to the point where I couldn't sleep because it hurt so bad to lay down that I spent many nights in the recliner. When I could take no more I went to my family doctor in tears telling him that I couldn't go on day in and day out feeling like I had a bad case or the flu because my joints hurt so bad. I take Lyrica, something for pain and sleep medications when needed. I an lucky to have a wonderful doctor and family support. It's horrible but you can always contact me for support. Take care and keep me posted on how you are doing.



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