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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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katmandulou responded:
Hi kasie75, and welcome!

First, when was your FM diagnosed? There are a lot of meds given to FM sufferers, and taking three doesn't scratch the surface. You need to see a specialist, whether it's a rheumatologist, a neurologist, or a pain specialist. I see a rheumy, he's a good listener, and he has a PA who splits appointments with him. It's good that I get to tell my stories twice to people who pay attention.

Cut yourself some slack. You have a lot going on, and realizing what you can't do today will help. How old are your children? Even a 3-year-old can help set the table for dinner.

There are some good resources in the right-hand column. Also check out http://www.butyoudontlooksick.com/ . It has good tips for us, and you have to check out The Spoon Theory - it will help you explain to people what it's like to be in your body.


Have your doc check you for Vitamin D deficiency. Sounds simple, but we who live in the northern hemisphere are usually lacking in D.


I wish you the best day you can possibly have. See you again soon,
Lou
 
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kasie75 replied to katmandulou's response:
Hi Lou, I was diagnosed about 1 1/2 ago and nothing has worked so far. I did see a rheumatologist and had an eval. He stated he felt my doctor was correct in his diagnoses. I told him I have been on Savella, Lyrica, and Cymbalta and he said there were many other things I could try however this meds are really expensive and I can only take them when my doctor has samples. He said he would fax over a list of meds to my family doc and to follow up with him.
Its my fault my kids are so lazy, I have done everything for them all of their lives. They are 10, 14, 15. Its hard for them to realize that I do not feel good all of a sudden when I seem to look ok.

I am so glad I found this site, it is so nice to talk to people who know how I feel! Im just upset because I finally got myself back in school and now Im not sure I will be able to finish let alone be a nurse if I do complete school. This disorder is crazy and it makes me so upset sometimes. I know I should think God I do not have something worse, I know there are people that have it way worse. I just hate being so unorganized and being so forgetful and the fatigue and the pain just all of it. I feel lazy and worthless sometimes. Anyway I will check out the sites you told me about and talk to my doctor about my vit. D.
Thanks for your help and for listening.
Kasie
 
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missist replied to kasie75's response:
Hi Kasie,
when I first had fibro about 20 yrs ago- the dr gave me an rx for flexeril and amitriptiline I think it was-- and that was about it. I had an ER trip for my first bout of ibs or spastic colon- that was incredibly painful. My pain the first 10 years was pretty intense. after a few more years I had a remission for awhile--it did come back but is not as painful.

Here is something I learned--some of us are helped by NSAIDs or by anti convulsants. I am helped by a combination of both. I cannot take ibuprofen- but I found that aleeve worked and took a layer off my pain. now alot of fibro people get nothing at all from NSAIDs like aleeve--but you should find out if it does ANYthing for you. if it does-- you have some inflammation somewhere--it may not be inflammation that shows up in blood work--but its real. Don't try to find one drug that does it all--there is not such a thing. Look for ways to remove layers of pain.

Vitamin D; The B vitamins (for meB1 was an amazing help) those are going to help take away layers of pain. An NSAID like aleeve or Celebrex-- takes away a couple layers. Something like gabapentin--which is generic neurontin--that can take more layers off. Add something to boost serotonin I take nortryptiline but amitriptiline also worked some. Those can take another layer of pain off and help you sleep.

Anyhow you will likely always have to tweak your meds and your routines--you need a daily exercise--and I do stretches in my hot tub--that seems ritzy--but its really a $200 used tub that Hubby had to fix up. Anyhow-- I live in a rural area and that helps me--there is no facility near here with water aerobics--that is also good--but you can't overdo--it takes time to work up to a half hour or more of exercise even easy water excercise can cause a rebound pain or fatigue issue a day or two later. Walking is good--don't over do at first.

There is hope--it is going to take a while to find a good mix for yourself but don't give up.
Will pray for you, Mary
 
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bette_kaffitz responded:
Kasie,

Fibromyalgia is just beginning to be understood. In the 23 short years since it got its name in 1990, We have gone from, "It's all in your head, you hypochondriac." to "There are real changes in the way your spinal cord and brain react to stimuli, both in amplifying your pain and in reacting as if a normally non-painful stimulus is painful." to "We think that there is a problem in the way your neurovascular system is working."

All these discoveries have set off mad scrambles among the big pharmaceuticals. Hence your Lyrica, Cymbalta, and Savella, But we are a big market. And we have a chronic condition. This means that we will be using our fibro meds for a very long time. We are a bonanza for the drug companies. They must have rubbed their hands together and started new drug searches every time a new discovery about the changes in our bodies was published.

And this is a reason to hope. There are many drugs already on the market that have helped SOME of us through these long years. And some of them will help you.

When I first felt the fatigue, pain, and spaceyness of fibrofog, it was after 2 weeks of false back labor, a 23 hour true labor, and sometime during the 13 months my second son was awake, screaming from 1 to 4 or 5 a.m. every night. That was in 1972.

My house got dirtier, my meals got simpler, my life changed--just as your life has. But, I raised two wonderful young men; I earned my associates,bachelor, and masters degrees; I taught for 11 years; and I still have a satisfying marriage with the man who has been here through it all.

You can do the things you want to--even with fibro. But you must first recognize that you will do it differently from the way you would have done before fibromyalgia. You will have to always be mindful of the state of your body. You will have to be aware of your need for quiet time, your need to pace, your coverage (or non coverage) of pain, your sleep (or lack of sleep), and all the new aches, pains, and other monkey wrenches that fibro is always throwing at you.

And because you will do all of this, you will be able to enjoy at least some part of every day. Even the bad days. But, with increasing self-knowledge, you will be able to limit your bad days. Yes, there will always be flareups, but you will be better able to anticipate and lessen the everyday pain, fatigue, and general ugliness of your fibromyalgia.

In a way, this fight with fibro has been exciting for me. I think your personal fight is one of the reasons you are so determined to become an R.N. Good. Learn. Share. Never let the Dragon win.

Bette
 
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missist replied to bette_kaffitz's response:
Kasie-- about $ for RXs. There are some that are cheaper. Gabapentin is generic Neurontin--very cheap. Alleve has a generic. I use Celebrex but it is spendy, works so good though.

Older tricyclic ant-depressants are very cheap too.

Just fyi. The newer 'wonder drugs' cost a fortune and there are alternatives.

Best to you!
Mary
 
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kasie75 replied to bette_kaffitz's response:
Hi Bette, I am on a anti-depressant and a NASID and a med to help me sleep, however my doc will not give me anything strong than tramadol for pain, I have begged him to give me something just to take on the really bad days so I can at least function. He says since I am only 38 he will not start me on a narcotic. I understand that you can build up a tolerance and then then you have to take more and more, and I also understand due to all the people out there that have abused narcotic it makes it impossible for us who really need them. I have never been addicted to anything and I would only take them when necessary so I do not see what the problem is. My mom also has a chronic illness and I saw her become addicted to pain medication and I would never do that do myself or to my children. What do you think, is my doctor correct, am I to just suffer and deal or should I switch doctors????

Kasie
 
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kasie75 replied to missist's response:
Thanks Mary,
I can use your prayers and I am going to find out which muti vit I should take and find out if I should take more vit. D. I will also get some vit B because If I understand correctly you can not take to much vit B. My sister also gave me a bottle of CALM, it is magnesium supplement drink so I am going to give it a try. At this point I would probably eat dog poop if someone told me it would help. lol
I am so glad I found this site, because I just don't feel my husband or kids really understand, which I really do not want to bother my kids with it. I just want them to be kids and enjoy their childhood.
Thanks
Kasie
 
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kasie75 replied to missist's response:
Hi Mary,

My doc gives me samples of my NASID, and my anti depressant is cheap and so is my sleep med, however its the fibro meds that are expensive. My doctor gave me samples but then he stopped rec the samples so I stopped taking them. I have been on three the main ones and I felt they did not help. The side effects were horrible so since they were not helping anyway I did not want those substances in my body.
I have tried Savella, lyrica and Cymbalta.
Kasie
 
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missist replied to kasie75's response:
Kasie-- there are some lucky folks whose families understand, but I think it is few. We have something that is simply mystifying--its hard for us to predict day to day ,hour to hour and nobody can SEE the problems we have. That really is one of the best reasons to find a support group or a friend with a chronic illness--finally you feel validated and you feel understood. You've found your Peeps,
Mary
 
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kasie75 replied to missist's response:
Thanks!!! Its hard for my husband because my family is so used to me taking care of everything for them. He is doing good with it, but I know he doesn't understand when I tell him I am going to do something and then it doesn't get accomplished for days. Its just a lot of getting used to, for them and for myself.
I am also worried, say I finish my degree and I am able to be an RN which I want so badly. With my memory, what if I forget something important and hurt someone in the process!!
The future scares me!!!
I do think God I found this web site, I know this is going to help me out so much, so thank you!
KC
 
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bette_kaffitz replied to kasie75's response:
Kasie,

The idea of using opiates is daunting. There is a difference between being dependent on them and being addicted to them. I know that I would never have been able to work as long as I did without the years I switched between Oxycontin and the fentanyl patches.

But there is a trade-off. I assume you will be driving. If your medication is just a little more than you need to take the most severe down to a manageable level, you can be unfit to drive. You will not be a good judge of this impairment. And you will be driving with some precious cargo in your vehicle.

I do not believe that it is possible to be pain free with fibro. It is a balancing act of being able to function through medication and yet not being made unable to function because of that medication.

I am forever grateful to a caring pain clinic staff who are willing to write scrips for any medication I might need. I have the faster but shorter acting opiate for when I truly need it. I never use it for more than 2 or 3 days--usually just for 1.

But having that little vial has helped me not to panic on bad days. Before I had this control, I would constantly worry about the next flare up. Now, I know that I have the tools I need.

Only you and your doctor (hopefully someone who knows and trusts you) can decide the level of pain medication you need either for daily use or for "rescue meds." Perhaps, your doctor will write you a scrip for a small number of pills to have available in case you need them--with the understanding that you will call the office and report on their use. You have no idea how comforting that security blanket of medication is.

You are a resourceful young woman. You will find the right mix for you. And then you will have to adjust it again!

Bette
 
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kasie75 replied to bette_kaffitz's response:
Hi Bette, I have taken Percocet before and it does not seem to bother me, for instance being able to drive and it really seems to help me on the very bad days. I almost had to drop my classes last semester due to days missed. I think I am just going to try a new physician because I need something like this to be able to function at times. I would not take it unless I really need it. I have been with this doctor for a couple years and he just doesn't seem to understand my pain, he basically tells me I need to learn to deal. He told me to tough it out on the extremely bad days and keep moving and he wants me walking three miles a day. Clearing he has never had such pain and fatigue! On the days I feel the worse I am doing good to get from one room to the next, so when someone tells me to tough it out, clearly they have no idea what we go through.
Kasie


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