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kasie75 posted:
I went from a mom of three that could work 40-50 hours a week, keep a perfect house and doing everything for my children and being able to work out. Within the last two years I have lost my job, can keep up with daily task and I am devastated. First it was the fatigue, I was falling asleep at my desk, I almost ran off the road being so tired. I would sleep my entire weekend and no matter how much rest I got, I am was always tired. I have always had some back and neck pain but nothing I could not handle. Now I am in so much pain that I just cry I hurt so bad.
Now I am trying to take a couple class a semester and want to be an RN. I can barley keep up. I can not focus, my memory is so bad. I can't be the type of mom I was and I want my life back. I fatigue is a little better since I am on meds to help me sleep better at night, but the pain is so bad. My doctor will not give me anything stronger than tramadol and it does nothing. I have tried the three main fibro meds and they did nothing for me. I am so upset because I want my life back and I want to be a nurse but I don't know how to handle this anymore. I don't think my doctor realize just how bad my pain is. Maybe I need to switch doctors. Since I am not working I have no health insurance and no money. Any advice would be helpful because I am so sick of this. My lab work is fine and they cannot find anything else wrong with me. Is there any hope?????
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dollbug responded:
Hello Kasie and welcome....pain SUCKS....and I think we FMers all know this. Sorry that you are having so much to deal with right now. Sometimes it takes several doctors to figure out what is going on with you, especially if you are dealing with the wrath of the dragon, aka FM. I hope that you will get a good doctor who treats FM and someone who knows how to help you cope with whatever is the problem.

Did your doctor check your Vitamin D level? It has been noted that low Vitamin D can cause some people to have additional pain and it can also affect other illnesses as well. This is just a simple blood test BUT you must ASK the doctor to run it as it is not included in the normal bloodwork. (I do not quite understand why - since it is important for so many people)

I do hope you will check out the info here under *tips* and *resources* and be sure and read the *member toolbox* which has some good *tools* that you might find to help you cope better.

I do know that I also suffer from *chronic fatigue* and for years I have tried to find something, *anything* that might help me with dealing with this. I have NOT found it yet. I have though learned now to *control my FM pain* by taking vitamins and supplements and doing other things as well. It does take a trial and error process to find what will *work* for each person. What works for one may or may not help you. Only you will know when you have found something which makes a difference. So hang in here and learn all you can about FM.

A heating pad can a be a good friend for some....drinking plenty of *water* is also a must for me. Doing gentle stretches and/or gentle exercises is a good thing also....(gentle being the important word here) ...sleep is so very important....so taking a hot shower at night right before bedtime, using lavender bath salts might help you relax so the you can sleep better. Learning how to pace, pace and pace even more can also make a difference. Perhaps you need a mattress topper also which some people find helpful.

Yes, there is hope. It does take time and effort to figure out what will make a difference for you.

Learn all you can about what others have found that has made a difference for them.

Take care.



MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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kasie75 replied to dollbug's response:
Thanks Dollbug,

I was told my a different physician that was Vit D was low but I thought this was just because I worked inside so much. I guess I also thought that would show up on my blood work and I do take a daily multi vit. should I be taking another supplement besides the muti vit.??
Kasie
 
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dollbug replied to kasie75's response:
Hello Kasie....when the doctor told you your Vitamin D was low did he tell you what your level was? Did he also not tell you what he thought it should be and how much Vitamin D you should be taking? Sometimes doctors do NOT share with patients things which should be addressed. I would encourage you to do some of your own research on this. (don't worry, as my doctor did the same thing) I found out later when I had to go to a parathyroid surgeon....and he told me that he thought my pain was caused from my Vitamin D being so low. This was before he did an ultrasound to find out that I was having major issues with the parathyroid gland which had to be removed.

The low Vitamin D though did cause part of the problem for me and it took me a long time to get my level back to within the *normal range (on the low end)....well over a year. My level was 12 when it was checked.

There has been a lot of research done on this and doctors are finding out that a lot of people have low Vitamin D. It is truly very important that people take notice of this. Some of the multi vitamins only provide a very low amount.

I think some of us having issues with also keeping our Vitamin D within the normal range. I do take Vitamin D now....my doctor said that I would need to continue to take it for the rest of my life.

I know that there are some FMers here who say that it did NOT make a difference in the way they feel. We are all different though and what helps one person may or may not help another. But I would certainly find out more about Vitamin D and just how it might affect your health.

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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coqui1219 replied to dollbug's response:
How low was you Vit D level. My doctor checked mine. It was 6 normal is between 30 and 100. She wants to get that under control before she starts me on any meds for Fibro. But getting Vit D under control is easy I was on 50,000 IU a week for 12 weeks, then they just need to figure out how much you need to take a day. My doctor says she takes 5,000, she was at 7.
The concentration bit sucks. I just got yanked from a grad school program, I can petition in three months, I have the fibro fog and take topamax (dope-amax) for migraines. It's affecting me at work.
I have my fingers crossed for you.
I know you will find a way.
 
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dollbug replied to coqui1219's response:
Hello coqui and welcome...I do not think I have *talked* to you. Actually, depending upon who you talk to or where you read it, Vitamin D levels can vary. And actually for some people getting your Vitamin D level up to within the *normal range and keeping it there can be a BIG problem.
Perhaps this is easy for some people. It took me over a year before I got mine up and then the doctor said mine was still on the *low end* when it was 42. The range is too wide, in my own opinion....I do not quite understand this. 30 being on the low end and 100 being the high end. Lots of room for comfort there. Perhaps some people might be ok at a low level, even though I find this very hard to believe and some people might need to be on the high end.

I have other health issues as well though and perhaps this is why it was harder for me to get my Vitamin D up to where it needed to be.

I can now tell when my Vitamin D level gets really low again...as my fingernails break really easy.

It is interesting that your doctor told you she takes 5,000 iu a day. But since she is a doctor, perhaps she has done enough research to know that she needs this in order to keep her level at a certain number.

I am not quite sure though why your doctor wanted to get your Vitamin D level under control before she treats you for FM. Do you have a lot of pain and she hopes getting your Vitamin D level up will make a difference in it? Or is there some other reason for this?

Sorry that the Fibro Fog is bad for you. I hope you can find something that will help it. Between this and the chronic fatigue that I deal with....some days cause a lot of challenges for me.

Take care.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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nononsenselady responded:
Hi Kasie,
I personally think the pain can wear you out. The thing that helps me out and that I have just discovered is my wonderful TENS. It has been a life saver for me. Get your doctor to prescribe it and then insurance will pay for it. I also take gabapentin and I sleep like a baby. I went from not sleeping at all or maybe a few hours to sleeping 8 hours with getting up to go to the bathroom once which is normal for me. I do go back to sleep right away. I actually think I am doing better than when my first doctor gave me all the pain medicine. I am also on topomax but I did get pass the brain fog.
I don't mean to say I am not still in pain but it is "sidetracked" by the stimulation of TENS. I think it increases your endorphins. It is worth a try.
 
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darlene_7808 replied to nononsenselady's response:
I have had FM for 8 years and am always in pain and extremely fatigued all of the time. Like most of you, I want my old body back! I am on Cymbalta and Gabapentin, and also take trazadone at night. I want to exercise, but am so exhausted after work, that I just can't do it.What is TENS?
 
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kmart51 replied to darlene_7808's response:
Hi. I was reading your post. They think i have fm and i have arthritis. Im trying to learn about the type of symptoms others have cause im not sure whats going on, but i know its painful. Sounds like from what you have said i have the same issues. I find myself having days where i cant get outta bed, like yesterday. Every inch of my body hurts. I get so sick of spending my days off in bed. And my family doesnt understand it but it so painful i cant do anything.
 
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booch007 responded:
Dear Kasie,

In reading your post I want you to rule out something.

I would love for you to ask about a sleep study. There are people of young to old age, big and small that have problems with what is called sleep apnea.

You have periods where you don't breathe right in the night and your oxygen levels drop. Your sleep is inefficient and non restorative. You fall asleep at your desk, in the car....can't concentrate. Your body is exhausted before the day even begins.

The answer is a CPAP machine...(oxygen pushed into the system with a mask) no meds. In fact our meds can make it worse. Please ask to have that done. Insurance will cover it with the chart info you have presented.

I will hope that is the answer you need. And you will be back in life as you were. Don't ask how or why this happens to people as we don't know it is neurological and in the obese it is a physical obstruction as well. But the fix is simple.

I am hopeful for you to be better.

Good luck, let us know...Nancy B
 
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kasie75 replied to booch007's response:
Hi Nancy,

I can't afford a sleep study and have no insurance, but my doctor spoke with me about sleep apnea and I do not have that. I do not do that in my sleep and I do not snore and I am not over weight. I know that you can have sleep apnea and not be over weight but the majority of people with it are. I am not as tired as I was. Since I started Trazodone, I sleep better at night and I know longer feel the need to sleep so much. I have all the sore places you can have, the points they use to dx you with fibro. One strange thing is how bad my arms ache. I never had arm pain until all of these symptoms started a couple uyears ago. Anyway thanks for the suggestion though. Of course I will never know for sure unless I have a sleep study but I would have to wait until I have insurance.
Kasie
 
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dollbug replied to kasie75's response:
Hello Kasie...MiMi NC. I do not know if you are close to any *medical school hospitals*....but sometimes you can find *sleep studies there. I participated in one several years ago. It did NOT cost me anything either. The were doing some experiments on a sleeping medication and I was able to enroll for no cost. They also have these for FM as well...as many others also. You must qualify for these. Sometimes they want older people and sometimes they want people who vary in age.

Just thought that you might like to check around in your area and see if you are close to any place which is offering them.

Take care and good luck.

MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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kasie75 replied to dollbug's response:
Great idea, I would have never thought to check into that. Thanks! As usual, you are full of great ideas! Thanks so much and I hope you have a pain free day or at least a manageable day.
Take care
Kasie
 
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bette_kaffitz replied to kasie75's response:
Kasie,

With fibro, you may not know where it will hurt when you wake up tomorrow, but you sure know it WILL hurt.

It's wonderful that your Trazodone is helping. Some of us go for years trying to find something that makes just a little difference. So try to be thankful--just a little bit.

If you have sleep apnea, then your airway is closing during the night. You have to gasp for breath. This makes you wake up or at least interferes with deep wave sleep.

Have you tried those Breathe Right strips from the drugstore? They are not a CPAP machine, but they may help to keep your airway open. Another thing to try is to sleep on your side, not on your back. You know that position they taught you for your back when you were pregnant. On your side, with a pillow between your bent knees. I just learned one more adaptation. Place one more pillow where it will support the arm on the side you are not laying on. The pillow between my knees is long enough--or I'm short enough--so that it also keeps my ankles from banging together. It's hard to snore or close your airway when you are on your side.

I hope some of this helps you sleep better and wake up with less arm pain, too.

Bette
 
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Anon_149959 responded:
I know where you are at.. In fact after this weekend I will be unemployed.. I am so angry at myself, my body has betrayed me, all the hopes and dreams I had (being a nurse is one) are gone.. I know my limitations and am afraid that I would screw up and hurt someone because I did not remember something.. However just because some of my dreams are gone doesn't mean I can't find new ones... Yes over the years (13 diagnosed but many many more after thinking about it as early as 12 I had the symptoms) I have become worst, and have accepted I will get even more.. God does not take away something with out bringing something even more beautiful back... I have my first grandchild on the way he will be here in Feb. Lord willing.. I have to think about my family I want yo be around for them.. I know how upsetting this is when you feel like your world as you know it falls apart.. Hang in there, prayers and soft hugs..


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