I think I might have to give up...

[RNRita]

Hi all. I don't think I've ever posted on this forum but am very active on the heart rhythm forum.  I am 52 years old but people say I look younger.  Doesn't matter, though.  I feel 80.  I am a nurse and have taken care of others all my life. I was diagnosed with FMS after a car accident when I was 30.  I have had the gambit of symptoms, and sometimes really wondered if that is what I have.  I know people who have taken to bed and not gotten out. I swore this wouldn't happen to me.  I take nothing but ibuprofen for pain and only once in a while.  I am very sensitive to medications. People don't understand that I am in pain 24/7.  I have gone through the past 22 years without complaining much.  They don't understand that everything I do is harder because I am in pain when I'm doing it. Yet, I hold a full time job, help run a business, and take care of family.  I do NO less than others around me, maybe more.  My husband is much younger than me and doesn't get it.

Lately, I have been feeling worse.  My stress level is high, but I decided to try to lose some weight and get my muscles in better shape.  I would like to lose about 10-15 pounds.  About 3 months ago, I started doing Pilates, push ups, walking at night and MUCH stretching.  Guess what?  I am NOT getting any more limber and my whole body hurts ALL THE TIME! Not a pound of weight loss either. I swear I am ready to get in bed and not get out.  The only thing preventing me is that the bed doesn't feel any better.

I've tried the antidepressants, but they all knock me out.  I have no time to be knocked out!  I am starting to wonder how I will make it through the rest of my life and WHY someone can't help me. Plus, no one believes I'm in pain all the time. I also have several other symptoms of FMS, like IBS (was so normal for many months, now diarrhea every day for 2 months, migraines, dizziness, leg and foot cramps that would put a man down, and many other things too numerous to mention.)

Does anyone get better?  I've also tried diet........NOTHING!

[RNRita]

I tried the memory foam pillow and ended up giving it to my husband.  That was one of the WORST for me.  I am on my third night of no pillow and it takes some getting used to.  Last night I woke up around 4am deciding I really needed a pillow so I slept till my usual 5:30 and guess what?  I have a horrible neck today.  Go figure.

Yes, I'm 52 and my husband is 37.  We are married 12 years and although I look younger than I am, I feel older.  The youthful look (at times cuz at others I am too "tired" looking) gets me NO sympathy, I'll tel ya.  hahahaahah

I also believe I'm pretty intelligent, having been in Mensa and graduating top in my class from college, however, this brain fog thing is kicking my butt.  Sometimes I feel like a blooming idiot.  I can't find words.  Ever say this: Ya know the thing that is over the other thing and makes a noise like....uh...a thingy?  HAHAHAHAHAH  Sometimes I think I losing it all.

Headaches?  Yup, daily.  I get woozy when I take something for it.  The pain is okay, the wooziness bites.  I hate it while driving.  I used to think that I had a myriad of different diseases or disorders, but I am beginning to see that it is all one.  I hope SOMEONE somewhere is working on a real cure.

[Joy697]

I read what others have said with much interest, as I always do.  I bought one of those expensive memory pillows and woke up in the middle of the night feeling like I was sleeping on a rock!  I have also slept on the foam mattresses and it did me the same way.  Different strokes for different folks, but I need something that will NOT conform but will move with me as I move.  I bought a Sterns and Foster mattress several years ago, and i don't know what I'd do without it.  Expensive?  Yes, but worth every penny to me.  Sorry I haven't responded in a few days, but I have a new grandbaby and I've been keeping my other two grandchildren.  I have struggled, but it has been difficult.  They're really good kids, but just the extra activity and the noises they make when theyre playing has done a job on me.  Also, found out today that the baby is having problems and will have to stay at the hospital an extra day.  Being worried about her has caused my body to tense up and hurt, and I've been sick on my stomach (nerves I'm sure).  I am now on the full dosage of Savella, but with all this other going on in my life, I can't really tell yet if it is going to be "it" for me.  I hope you are having a good day.  I'll touch base again soon.
Joyce

[ChitChatNine]

Hi, I can only imagine what you endure on a daily basis.  I'm glad you've posted and have met some new friends.  We are here for you anytime ... usualy anytime day or night if you post there's always somebody here.  Have you ever tried any relaxation therapy type tapes along with yoga maybe .. low impact type yoga?

[Phtartist]

  I have headaches on top of daily headaches. I mentioned Fibrofog in my earlier post and the headaches I get. I only mentioned I got a three week headache from throwing the ball but that was on top of the usual headache. The headaches are from my neck or shoulders, myfacia, or stress. Either way, I have one every day. I can be slightly free of a headache and get aggrevated at something and BAM, one will come on because of nerve involvement and stress.

I hang around in a young community 35 year olds and I'm 57. I know what I have is Fibrofog and I know I'm brilliant.  I know what others think I have is memory lapse due to getting older. Kills me because I am as sharp as a tack at times. I had a 3.9 in college when I was 40 and 7 years after college I got Fibromyalgia.

Ah the injustice lol, tis life and its trials.  I found rolling with the punches instead of fighting FM and not wanting to have it releases some stress, inner stress, anger, mourning. It is an emotional rollercoaster having this illness.
When you can Accept and say " I have Fibromyalgia I accept that" and move through life knowing your limitations and setting acceptable bounderies, then you can be happy.

[tanglewood]

I'm glad the "no pillow" worked for you. If I sleep on my back I snore and my wife makes me roll over onto my side. :)  I do have a wedge and that helps me. Whatever works! Good luck.

[grendslori]

Rita, I was reading that you have problems with your neck. I have severe arthritis in my neck (can't turn my head too well from side to side or tilt it or touch my chest etc) so I thought I'd tell you about this....have you tried one of the pillows that is shaped, for lack of a better way of saying it, like a wave? It is like a memory mattress, like a sponge that conformes to your body? Furniture stores sell them; we got ours at Art Van when we bought our new mattress. They are expensive, we paid about $100 per pillow (king size) but they are WONDERFUL if you have neck problems!! how are you feeling today?

[RNRita]

Thanks again.  I am also wondering if any of you have the horrible brain fog and headaches.  Yes, I have it all.  For about two years (started a long time ago, but I didn't notice as much) I am having times where I feel so dizzy.  Not vertigo, but woozy.  VERY woozy.  I had to quit a job because of this.  The first time in my life I EVER quit anything because of my body.  Anyway, I cannot get anyone to help with it, and it is very bad.  BUT I learned to work with it anyway.  I guess you triggered me to write about this because you mentioned it in your post.  It is ALL one disease, isn't it.  And I have ALL the symptoms.  

[Phtartist]

Hi, FM is to me not progressive if you accept that you have it and listen to your body.
It angers me to the point of arguing with specialists in the field of FM with their lose use of the term EXERCISE.  This does not mean, treadmill, stairmaster which when inclined can trigger lower back TRP'S (trigger points), weights, etc.  Exercise means low impact swimercize which is the best, walking to keep our blood pumping, yoga to keep us flexible.  Throwing the ball to my dogs now, triggers a three week headache.
Our illness is a neuromuscular illness.  The neurological system, for whatever reason is highly sensitized. Our muscles even though not inflammed are intertwinned with these nerves, our skin is, our brain (fibro fog, hyppocampus part is effected) and stress again, triggers them to flare.

I notice you put emphasis on other people getting what you feel and what you go through. Thats a hard one to deal with and one I struggled with for years. What worked for me was taking care of myself. Not going to functions to reserve energy or because I felt to ill, is an IN your face, example of how you feel.
I printed out info from the internet for family member about FM.  
The "Fibromyalgia Advocate" by Devin Starlanyl is a valuable book. It has chapters for family and doctors.
Good luck

[RNRita]

You are all so sweet to answer me.  I expect no less of people who must live with never ending pain.  I had a little bit of a let up this am.  You won't believe it.  One of my most painful spots is my neck.  I was in a car accident (afterward was when I got diagnosed, many years ago, by a doc at the Good Shepherd rehab), and I had EXTREME whiplash.  This seems to have been the catalyst.  My neck swelled up and never went fully down. I have fibrous tissue at the base.  Not too noticeable unless I show people.  Anyway, I have been really having a ton of neck pain and have tried all different pillows.  Well, last night, after waking up one too many times from trying to turn, I threw my latest pillow and slept without one. I woke up for the first time ALMOST PAIN FREE (in the neck area)!  It lasted most of the day.  I will see if it is a fluke tonight.  

Also, has anyone tried the Dr. Shaw or any other doc "cures."  Do they work for anyone?

[tanglewood]

I am sorry to hear that you are struggling so much and agree with everyone else that you need to get more rest. I use to run five miles a day and now I walk. Once you have Fibro you can't push your muscles, but you can exercise to whatever degree that your body tolerates as long as you also get rest. Yes, stress definitely aggravates FMS. I hate taking meds too, but caved in long ago and now take Methadone and Norco as well as an anti-depressant. I am switching from Lexapro to Savella. I had great success with Lyrica, but it made me suicidal. I still wish I could take Lyrica. I think you need something to help you manage your pain. Playing the guitar can be therapeutic. Whatever you can do to rest, relax, and manage the pain. Good luck and hang in there - don't ever give up.

[bdancer4ever]

I have 'severe' Fibromyalgia!  I cared for my mother for 3 years and the stress from that then her death increased the Fibro pain and I became bed-ridden from the fatigue for the past 3 years until i went on Neutontin!
Now I'm up everyday and can manage the housework, go to the store, etc.,    
Stress Management is CRUCIAL!   So is PAIN mangement.
I know you are sensitive to medication but perhaps you have yet to recieve the 'Right' Meds!
No amount of stretching (which I still do), meditiation, or exercise will ever give a long break from the suffering.
Try small doses of Atipan or similar...you MUST REST often!!!
Too much activity will exaccerbate the inflammation.

I have tried everything for over twenty years and only recently found relief with hydrocodone and Neurontin.

I believe Fibromyalgia is a neuroligical condition....too many neuropeptides which makes us extremely sensitive to pain.

[supermomma531]

Have you ever tried to take something just at night or whenever you get to go to sleep? I too have fibro and I take tryptophan at night time. It does me a lot of justice! I just recently went back on this medication after being off of it for about 3 yrs. I had a baby in between and had no coverage. It is hard to find a dr who believes in fibro. I believe that stress does a lot to a person. It will make you feel worse than you should. Try to learn some stress techniques for yourself to relieve the pain. Do this as much as possible. It will help. But you also have to allow yourself to grieve your moms death as well. Once you have done this, after a while, you will feel better! Take care.

[grendslori]

Yes, I know you from there as well. I have a few heart issues myself, but I don't write over there because of that reason. Cardiology was the field I worked in and after I quit, my daughter was born with a severe form of Bi-Ventricular Hypertrophic Cardiomyopathy and ended up having a heart transplant. I know A LOT about cardiology at this point, I've studied it for YEARS! So I try and help people out if I can. As for the Fibromyalgia....I think everyone on here will tell you that this is a progessive disease process, I know mine is. My GP is GREAT! I just LOVE this lady to death! She LISTENS to everything I tell her, has empathy and LOVES to chat about EVERYTHING. She talks about her family, her vacation, you name it, she'll talk about it. And on top of being so friendly she still takes all the time in the world to sit and listen; she never rushes me. She sees other fibro patients and she would agree that this is progressive, whatever this disease is. I know stress plays a part in all illnesses, but what about those of us that have little to no stress in our lives? I mean, I have a wonderful husband who takes care of me, like you wouldn't believe. Finacially, we are very comfortable which means we are free to go anywhere and do what we want, if we want to take off for the weekend and go to a hotel on the lake, we just up and go. I don't work except for the kennel we have. That gives me plenty of exercise, believe me! We raise and show Great Pyrenees which is a very large breed; they take work. That work is getting harder and harder for me to do at this point, so I'm not sure how much exercise plays into improving this disease. How and when did you get diagnosed, and by whom?    

[RNRita]

Oh you know me from the heart forum, too?  Don't we have a lot of stuff in common!  I was told fibromyalgia isn't progressive if you keep exercising.  I think stress makes it much worse, but I do feel like it is getting the better of me.  I have had flare ups in the past, and gotten through them.  This one is kicking my butt.   Thanks for being here.

[grendslori]

Hi Rita.....nice to see you on this forum too! (I also do a lot of writing on the heart forums). You asked if anyone ever gets better. I don't know if they do. I asked this same question on this forum and everyone that answered, said that they felt that they had a progressive disease. I know for myself that I have gotten so much worse over the last few years since I was diagnosed at U of M. I used to work a few years ago at a store very similiar to a Super Walmart and I was one of their best and fastest workers in our department. Now, I can barely walk through the parking lot and I dread doing the shopping, trying to get through the store itself. The majority of days it's like that, not all days, but the majority. We raise and show dogs so we have a kennel. I used to be able to handle that without any problem, now it has become a chore (even though I still love my dogs!!) I really don't know what to tell you. I am starting to see a neurologist at this point. I have tried Lyrica, but I don't tolerate that at all; I take it occasionally at night to help me sleep or if I'm having a really bad day and plan on trying to watch a movie in my recliner. ( I usually end up sleeping through that because of the Lyrica). Having a PMS moment doesn't help either, so stay on the forum here and vent when you need to; everyone will certainly understand!!  

[RNRita]

Thanks so much for taking the time to write.  As much as I know I feel bad for anyone with this horrid thing, it feels good to know I'm not alone.  I love nursing, but not the job I'm in.  There are no other jobs out there right now, but I know if I find one I like, I will feel, at least, 50% better.  I just don't understand why my muscles have to feel so tense and hurt so much.  I am stretching and just cannot make them better.  

I really tried the antidepressants, but have had no luck.  I can't sleep through work and have no time to work up to a level that may be effective.  I also have PMS right now, hence the feel-sorry-for-myself attitude. lol

I am still trying to get over my mother's death.  It was a year on June 24th.  Somehow, I am not able to deal with this either, but I'm trying.  I know I am depressed, believe me, but I feel I need to find a solution.  I also wish I had some energy again.  Once in a while I get some and boy can I work then!!!!

Oh well, enough negative talk....I gotta go back to work tomorrow!  BLEH!  hahahahaha

Thanks again for writing.  I'll be reading this forum a lot now.

[Joy697]

You say "giving up"????  My goodness girl, you have been struggling and pushing yourself for all these years.  You're not giving up, you are just being realistic about the fact that it is getting tougher for you to keep on keeping on.  I'm older than you, 65, but I had to finally retire two years ago because I just could not continue forcing myself to go to a job that I loved.  I stayed much longer than I should have been able to, but I finally had to be honest with myself.  I was denied disability, but I was old enough to take early retirement for social security and I had 30 years with my job and could draw full retirement from there.  Of course, it is less than I could have received on disability, but I just simply could not go on.  At the time, I just felt like I didn't have the energy to fight it.  Not knowing your situation, I can't tell you to go on and retire, but if you can, please consider it.  You will be denied disability on your first try, but appeal it.  There are numerous attorneys who specialize in disability cases.  They will do all the work for you (wish I had known that two years ago).  I too was under a lot of stress, being the director of Social Services.  I also tried different exercises, but when I did I would find myself so exhausted for several days that I could hardly move.  I had a massage therapist who knew how to work with fibro patients because she also had it.  She was wonderful, and I always felt better afterwards.  However, the ease would only last for a few days.  I couldn't afford to go as often as I needed to.  I too could not lose weight, although I did not eat much.  Although I too was sensitive to medicines, I have taken Hydrocodone for pain for many years.  It was the only thing that helped.  I have just started taking a new medication, Savella, and I am hoping and praying it will work for me.  Sorry I've spoke so much about myself, but I want you to know that there are folks out here like you.  I hope your doctor is understanding and believes that fibro/chronic fatigue is real.  If not, find one who does and will work with and for you.  One thing that I do that temporarily helps is meditation.  There are a number of tapes that can guide you through it.  At first your mind will be thinking about everything, but eventually you can get into the zone.  Relax your mind and your muscles (body).  Allow your mind to experience soft lights (white, light blue, light green, etc.).  You will be amazed how much it will help.  I still have days when I am on the sofa most of the day, so it hasn't been a full cure for me.  Hope what I've written helps you.  But don't you dare just give up.  You've got many years ahead and they can be good ones.  Be kind to yourself and learn to say no when you feel like you can't do something.  Those of us on this blog believe you and I know I speak for myself when I say that I will share anything that might help you.  Blessings to you.
Joyce
PS:  You may need an antidepressant, because being in pain all the time can make you depressed.  There are many out there, and you may need to start on a low dosage and build up.  They also made me sleepy at first, but now I can take it without feeling that way.  Before I got so bad, I took Elavil, and it did me good.  I have a friend who did not have fibro, but she had had depression almost all her life.  She started taking Elavil, and it gave her life back.