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Lack of coordination, fatigue, internal body shakes-HELP!
10 Replies
pam80 - December 4

Hi everyone. I hope that you all are having a good weekend and your pain is low.

The past few days I've been noticing some new symptoms. I feel very uncoordinated, I'm bumping into things, when I go places I think everyone is looking at me, I feel like my body is shaking internally-- and my hands are shaking. The lack of coordination is really bothering me-- and I feel like I'm in such a deep fog, I have to fight to keep my eyes open. I also have this nervous stomach feeling. I am due to get my period soon and I have a lot of stress but I feel like I can't function.

I just feel SO out of it and my head is always pounding. I'm extremely tired and it's hard to keep my eyes open. What should I do about this? My body pain is mild but it feels nervous and shaky inside.

I'm trying not to think that I'm getting worse and am hoping that this fog will lift. I feel like a weirdo because I get extremely nervous in public- I walk into things, drop things, etc.

Please tell me that this will get better? What supplements can I take to help with this fog. Fantod-you had mentioned a supplement called phosphatidylserine. Would that help with all of these odd feelings?

Any feedback would be much appreciated-- especially ideas on how to get rid of this fuzzy headache and off balance feeling.

I just read my post and realized that I repeated myself a lot...sorry about that!



Fantod - December 4

Hi Pam - I feel so bad for you whenever I read one of your posts. The balance and lack of coordination issues are all FMS related. I have a wheelchair that doubles as a walker just for those special occasions. I fumble things all of the time. I try to make a concerted effort to pay attention to what I am doing and proceed in a mindful manner. This too shall pass....

Yes, phosphatidylserine should help with your memory issues. But, frankly until you start getting more consistent sleep nothing is really going to help. Take Melatonin every night along with your normal sleep aid. Go to bed and get up around the same time.

FMS symptoms typically get more pronounced around your monthly cycle. If it is possible, sleep disruptions get worse, anxiety increases and stomach issues are common. I think some of your current symptoms can be attributed to that time of the month along with all of the anxiety that you were experiencing anyway. Evening primrose oil is very helpful for symptoms relating to your cycle. It should lessen some of the jittery feeling and if you feel bloated, it will help with that too.

Pam, you have got to break this cycle of beating yourself up all of the time. I realize that you are new to all of this and have not had much consistent medical help so far. I'm not picking on you. I want you to recognise the pattern and try to be more proactive about stopping it before you really get going. Everything is going to get better. You have to live in your body and right now, you are not being a good caretaker. Find something to do that you like that will take your mind off FMS. Work on your journaling and try to be calm. I'm so worried about you, words fail me. Get some rest this weekend and be grateful for anything positive in your life. Gentle hugs.


kvc33 - December 5

Hi PAM I sometimes get the shaky feeling in my chest but very rarely. It usually happens when I am extremely exhausted. Try not to pay too much attention to all the symptoms. In time you will get used to them and they will fluctuate. This is going to sound odd but stop trying to push them away, it only causes more stress and there is no quick fix. Do some deep breathing exercises, watch a funny movie, count your blessings, just stop worrying your brains out. Accept the fact that you are ill right now and know that so many other people are too. I sometimes rock myself or read spiritual material to calm myself. Hang in there kiddo, you'll be one of us veterans before you know it.


pam80 - December 5

Hello everyone-thanks for the feedback. I guess I do beat myself up a lot and worry like crazy. Honestly, I think that's how I got FM-by being under a constant state of stress and worrying about every little thing in my life. I'm not saying that it's all in my head, (although that's what my family thinks), but I think my negative way of thinking and outlook on life contributed to me getting sick. I refuse to accept that I will be sick for the rest of my life. I have to believe that I'm going to get well-thinking that way makes me feel better emotionally. I've been in such a depressed hole for quite awhile and the depression is only making the physical pain worse. It's so hard to change the way you think but I have to try. What do I have to lose, really?-maybe the fibromyalgia!! :)

Fantod- I don't think that you're picking on me. I think I understand what you're saying about me not being a good caretaker. I know that I need to find something to do that I enjoy and stop concentrating on my symptoms. I find that if I let my thoughts go negative- like thinking I will never get married because of fibro then I get more upset. My psychiatrist said that I will heal myself if I change how I think, get on a better sleep/eating schedule, and find some positively in my life. I guess it's the whole mind/body connection. I'm having trouble with finding something positive in my life. I don't really have any friends, no boyfriend/hubby, my sister isn't really understanding of what I'm going through, all I really have are my parents and some extended family members. I am grateful for that..OH and I have a cat who I absolutely adore-and she loves me back as much as I love her. How do you find positive things in your lives?

Kvc33- so you think I should stop pushing the pain and all of the other symptoms? I guess that makes sense. When I get a new symptom or have a real bad pain day I become very angry, upset and stressed out. I know that's not good for me. So you get the shaky feeling too? It's a little better today, but yesterday it was out of control!

Thanks for your words of encouragement Fantod and Kvc33- it's nice to know that there's people out there who understand what I'm going through. I am going to start meditating and doing some deep breathing exercises. The book I'm reading by Nancy Selfridge says that meditation is very helpful in getting rid of this fibro.

Do you guys believe that you will be well again or have you come to accept the illness? Thanks for saying that it will get better. I want to live my life and be happy. I'm so tired of being depressed!!

I have a question about PCP started me on 50 mg or Amitriptyline 2 weeks ago and last week he bumped it up to 100mgs. I have been like a zombie this week and I was just chalking it up to fibro, but I just did some research and read that Amitriptyline is supposed to be started at a low dose-which I knew and figured the low dose is 50 mg. Nope, I'm wrong, the starting dose is 10 mg. Maybe that's why I've been feeling so tired and on edge. Maybe I'm on too much? It completely knocks me out at night but I'm so tired in the morning and I've noticed that I've been grinding my teeth more on this med. I clench my jaw so much at night sometimes but lately it's been more. I can't wear dental splints b/c it makes me clench down more. My headaches are horrible- my temples feel like someone is squeezing them and my eyes hurt. My ears are buzzing like crazy. Yesterday (like I said in my earlier post), I felt wigged out. It was scary- I had horrible tunnel vision and felt like everyone was looking at me wherever I went. That's gotta be the meds.
Any thoughts on this? Maybe I will post this part on the medication forum too.

I might go stay with my Grandma a couple of nights a week. It would probably help with the situation with my mom. I want to feel better and I also want to find a good doctor on my side who is willing to help me. I am going to a new rheumatologist on Wed. My dad is taking off work to take me. My mom refuses-her way of thinking doesn't make sense. She thinks that I should stick to the rheumy that I went to last week (why?-I don't know..he was of no help!).

Talk again soon. Thanks for being so kind!


kvc33 - December 5

Hi Pam I do think that you are probably overmedicated. People with FMS can be very sensitive to meds so much so that some like myself can barely take any. You are going to have to look at the positives in life in a new way. Most people think that a good income, good marriage, good job, etc. are the things to be happy about but they are wrong. Here are some of the things I'm grateful for and think about on a daily basis: my computer, my car, my cat, nature, music, books, tv, my fridge, a bathroom to myself, hope, living in a safe country, the ability to give, enough food to eat, a warm bed, living in a rural community, the library, art, crafts, decor, games, laughter, windows, the postal system, shall I go on? Positives are everywhere but we have been taught to expect so much that we don't even notice them. My advice is to stop recording your daily symptoms in your mind. When it comes to chronic illness you have to look at it in terms of months and years, not days and weeks. It is good that you want to get better and hope is always a positive but you can't force it Pam. Right now for instance I am very foggy and out of it. It I get upset about it, it will make things worse so I'll accept it for now and see if it changes. I always have hope of a better day, but I don't ever count on it. You have to find a balance between acceptance and hope.


slb71 - December 6

hello pam - i have also had the feeling of shaking inside my whole body. the first (& worst) time i was at work, upstairs all alone putting supplies away when all of the sudden i had awful shaking all over. it lasted about 30 mins. i wasn't visibly shaking though. i thought i was going to pass out and would not have anyone to find me for a while. since then i have had smaller instances of feeling "jiggly" inside. also like something was rushing through my body starting at my hips & moving up. kinda like rolling waves.

like fantod pointed out, my symptoms magnify hugely around my monthly cycle. it's worse for me the day before i start. last month was not as bad as the previous and i'd like to think it will continue to improve but time will tell.

i also agree with kvc33 that you should try not to focus on the negatives and find things (no matter how small) that do make you happy. find something or someone that makes you laugh. that helps me a lot. don't think about the can't(s) and think about the can(s). it will consume you and swallow you up if you don't. i am new to this too and have gone through so many of the same feelings and thoughts as you but i had to, and still have to, make myself focus on something else besides all of my old symptoms, my new symptoms and the ones i hope i don't get. i have to make a conscience effort to do it. it's not easy but i know i'd drive myself crazy if i didn't- not to mention those around me!!

hopefully one of these days your mom will come around. i know how important it is to have your mom by your side. i have struggled with this in years past with my own mother. thank God our relationship is different now & i pray yours will be too soon.

this is such an awesome place to come and share, ask, suggest, and be informed, isn't it? i know you're glad to have found this forum as am i.
hang in there, pam.


Fantod - December 7

Pam - Positive things in life with FMS are pretty basic. I'm grateful that I don't have something life threatening like cancer, a roof over my head and can afford to eat, that the sun is shining, that my cat is a happy little person with fur, that I still have my wits about me so I can work on my genealogy projects, that I have enough sense to know when to quit and rest, that I have books to read, the loving support of family and friends, the will to survive, the ability to think outside of the box, friends with FMS to talk with online (YOU), and that not every day is going to be wonderful but I don't have to work at making it worse than it already is... By now you should get my drift. I hope that your appointment with new rheumy tomorrow goes better than the first one. I'm glad that your Dad is going with you. Take care.


axxie - December 7


Please read, it might help you..... I fully understand how you feel. Do not despair, after feeling the blues, denying and finally accepting, you will fix things you can. Replace the bad thoughts with new ones.

As you know there are no cures, but there's remission and start to feel better as you learn that you can feel better physically and mentally.

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.
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.

As for the drugs, it's matter of preferance to take them or not. I found that taking some and leaving some is best.... that way I have more power to choose and because I am sensitive to drugs, I have to be accountable to me and how I am feeling.

I promise you at one point you will give up the fight and accept what you have and you will want to feel better so you will try knew things and familitar things to make you feel better.

As for being single and thinking you won't marry, that is all in your head, by dear friend. Remember, until you finally figure out what you can do to make yourself better you will be at the mode of recovery.

A new attitude and a smile on your lips, because you feel better, will make you want to meet others, and who knows a love could be part of your new life.

Don't think that fibro is all bad, isn't, I'd rather have this, than have cancer, or have diabetes, etc.

Your attitude helps tremendously to reach better days.


pam80 - December 13

Thank you everyone who responded to me- I'm sorry that I did not respond back to you until now. I've been down in the dumps but TRYING to stay positive. I have been noticing MORE symptoms-ear ringing, ear pain (both probably from my TMJ), nausea, dizziness. UGH. I'm doing my best to not focus on them but they are uncomfortable-at best.. Not to mention the all over pain. I have a question- will these symptoms wax and wane or what am I supposed to expect? It's like everyday there is something new.

I do get concerned about marriage because I'm scared I may never be healthier- AGH, positive thoughts, Pam! I understand that I need to be more grateful for what I have. I know, I know- I'm working on it. In the mean time, let me know about these symptoms. Ow, my tummy and ears :( Better days ahead??

I hope everyone is doing OK!


kvc33 - December 13

I think it's all a matter of time for you Pam. Right now you probably will notice new symptoms a lot. Then it will get to the point where there aren't any new symptoms and you will be somewhat used to the ones you have. You may then see some of them diminish and i do hope that in time you can recover. I have that hope for everyone.


slb71 - December 13

pam - i also continue to have new symptoms. they use to be everyday or so but now there are weeks in between something new shows up & other symptoms really do start lessening their intensity. not all of them though.

hope you're doing better today!



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