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patricia314 posted:
Hi everyone. I am trying to find some support for my fibro. I don't understand why I feel so horrible, can't sleep, hurt all over. Then there's the fatigue. In addition, this severe winter has left me cooped up inside for months. My students think I'm losing my mind as i can't remember so many little things. Add to it the stress from loses in my family, financial problems, and additional illnesses including RSD and recovering from thyroid cancer.Sometimes, I feel like there is something seriously wrong that no one can find. Can fibro really make me feel all this? I take Cymbalta and Neurontin. Without the Cymbalta, I feel like I've been hit by a truck. The depression is so bad I don't think I can make it thru the day sometimes. I want to run away at 54 and actually did once. I need some advice and understanding. Help me learn what to do and to accept this terrible hand i've been dealt. See the tears start. Today's a bad day. I hurt sooo bad cause I went out for the first time and tried to do something I enjoy. What's the point if the next day I feel like this....like I'm dying. How do you keep going? A falling out with my sister has left me stressed beyond belief. It's been since that time that the symptoms have worsened drastically. Yes, I'm seeing a counseler. Please guide me.
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dollbug responded:
Hello patricia and welcome. The support site is a bit slow on the week-ends. I am glad though that you have found this group. I am sure you will soon find something that will help you cope better. Please check out the info under *tips* and *resources* and be sure and review the *member toolbox* as well.


Sounds like you are dealing with a lot right now. I think we all have some bad days. On these days is when we need to reach into our *toolbox* and try to use something that hopefully will improve how we feel. Perhaps using a heating pad for a while or taking a hot shower using some lavender bath salts right before bedtime might help you relax so you can sleep better.


As for the fatigue....well, I wish I could tell you something that might help this as well....I have been trying different *things* though for a long time now and still have not found anything which has made a difference for me....but I continue to look.


I think we all have wondered at one time or another IF there is something more wrong with us than what the doctor is telling us....but if you read and learn about the wrath of the dragon, you will probably see that this is a very mean and ugly illness to deal with. It can affect people in different ways. Most of us also have other health issues to deal with as well, which certainly does not help us.


Stress does create more problems for us....so you should probably try to keep your stress level as low as you possibly can. (I know this is quite hard to do)


Have you tried any vitamins and supplements yet?


Have you had your Vitamin D level checked yet? IF not, then you might want to ask your doctor to check this when you go back in. Low Vitamin D can cause some people to have additional pain and it can also affect other illnesses too.


I am sure others will chime in here.


Take care.




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

 
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booch007 responded:
Good mornig Patricia,

Oh you brought me back to the beginning of my journey with this. I was so twisted with the symptoms and getting myself into a black hole.....that I tried to do things and then the next day I was planted on the couch, heating pad attached to me like a new arm. In so much pain.

First, it can get and will get better.

It is a process and it takes time to learn of YOU. What are your triggers and what are the tools you need to help yourself.

Nothing in my life is the same. I changed everything. I changed my job, my dishes in the house as that was a big trigger...they were too heavy for me. I have corelle dishes now, they are light and don't break if I lose my grip.

I bought a front loading washer and dryer as that was another huge trigger for me. Laundry wiped me out. So I had to figure the trick around it.

Find up in the upper right... Dr Pellegrino's posts (more discussions) they were so great with information and tools for us. We were blessed to have him stop by years ago.

I believe to switch the attitude to this is big. I went from victim to SO MAD...I had a physiatrist that told me "don't get sad, get mad" It makes you productive. Hard to pull this switch but I wasn't giving in to this, I wasn't losing any more of me.....

Still to this day, I really live to work and survive. Anything extra has to planned well. There is a thing called the spoon theory that helps to put this into something concrete for us. We only have say 30 spoons of energy for the day and you figure out it takes 5 spoons to vaccume or laundry was a 8 spoons etc. ( My job is about 20-25 spoons) Then if you run out of spoons there is nothing more you can do for that day.

It helped me to pace and learn about me. I journaled my day and the NEXT day and how I felt. Looked back to figure what DID ME IN. It took a long time to get ME down, but I did.

This is an awful situation to be in and knowledge is so important. I recommend a book called FM and Chronic Myofascial Pain, a survval manual. Dr Devin Starlanyl and Dr Copeland wrote it. (Aazon.com 19.99) I think the first edition is most educational and then second is good for therapy. Learning about you though is so important.

I was an ICU nurse for my career. I have changed everything about me since this. I see so many patients in the office and have come to the realization that everyone is given something to challenge them.

This is ours. Not cancer or being unable to breathe....my two fears. But this is momentous to work through and with.

We describe this as a dragon. Always there from when you awake (sitting by your bed) til you try to return to bed. What you do during the day to help keep him behind you is so valuable.

First thing I learned here was a memory foam topper for the bed, what a help to sleep. I tossed all night to get off my trigger points. Lack of sleep then helped take the memory and the fatigue was tough. I learned to rehydrate the body over time and offer it only good and that helped me to stretch and the muscles did so much better. I still have this and it is a wax and wane in pain levels. But better...

Try the book, get educated and look around on this site as Mimi stated. There is alot here, from the fmily here that shares their paths. There is always going to be a rock of frustration or a bowl of tears sitting on your roadside. It comes with the dragon. Right now it seems he has you....we need to get you to get him behind you so you are "draggin him!" and the ultimate is dancing with him. Knowing your limits and tools and that your meds and supplements are right on. This is what we all here hope for.

Lets say today is the worst of it all and it can get better as you stay here and learn.

All my best, Nancy B
(I am here on the weekends)
 
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Anon_10089 responded:
Hello and sorry for what you're going through. It seems ridiculous, but yes, FM can cause all those problems.

There is so much information and much to say but I'm a little short on time right now. I wanted to say that with all the things you have gone through, mixed with the FM, it is no wonder you're having memory problems! Plus, as things, physical and emotional build and build, of course our ability to cope is going to lower. We can only take so much!

There is hope and you can feel better. Since it is slow here on the weekends, please read through older discussions too. I will try to post more later.

At the very least, I hope where you live there is some sunshine soon!

--JR
 
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patricia314 replied to dollbug's response:
TY so very much MiMI. Just speaking to someone who finally understands felt like a huge weight was lifted off my shoulders. I will foloow your advice; look into everything. As for my vitamin D, the Dr. checks it every 8 weeks. It does tend to run very low but can also be in the normal range at times. When it's down, I do take the supplements to boost it. Ty for taking your precious time to write to me. Your kindness is appreciated more than you know. Best wishes to you.
 
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patricia314 replied to booch007's response:
Oh Nancy, TY so much. I do feel like the victim right now in so many aspects of my life. Your words hit the nail on the head. There are so many household chores I can no longer do....especially laundry. Taking the clothes out of the dryer, hanging or folding them is a serious issue. Vaccuuming also. I use to run a business with 300 students and 20 teachers. I worked from morning to night and then some. I personally taught 50 students a week. Now, I teach 18 students out of my house. Big change. I also run a large non-profit music association that hosts my state's largest competition, over 1200 contestants. It's like planning a party for 5000 people. Thats in May so the stress til then is high. The satisfaction I receive from knowing that I can contribute to these young lives is invaluable to me however since I feel so useless and defeated in my personal life. My husband is a gift from God...doing all the things I can't, as well as wiping my tears, holding my hand, and telling me we'll get thru this. He was off work for the past 4 years. He was a union electrician and times were bad; simply nothing out there. Now that he's returned to a job he adores, I am on my own at home. That is a huge adjustment; I'm still learning to be alone here. The guilt of having to have him do so very much around the house is high. I'm not sure how to deal with that. Steve doesn't complain or expect me to do anything at all if I can't, but I want to do more not leaving as much on his shoulders. He tells me he doesn't understand why I'm not mad. I realize now that I need to fight; so far I've been giving in. That stops today.

I've started massage therapy. Tried sleep techniques last night that my psychologist suggested and I did rest better. I stretched when I got up and that seemed to help. My Dr. said regular exercise is important but that each time I do it, I will feel like it is the first time over and over again. I definately will get a memory foam topper and start a journal, as well as look into the book you recommended. The spoon analogy put everything into perspective. I have to learn to say No, I need to explain to my family and organization members what Fibro is all about; they simply can't comprehend the pain when I look good on the outside. I don't have any real friends. They all drifted away after the cancer and when I no longer accepted invites, always making excuses as to why I couldn't have lunch or attend some event. It seems Fibro can be a very lonely world but I see that I let it be that way.

As I told MiMI, I have to get angry now; stop being the victim. I couldn't imagine ever doing that but now that I have people, no, friends, who support and understand, I can and will do it. Today is much better than yseterday. Not sure why the pain is less, but it is. I have more energy too.

TY for taking the time out of ur day to speak and help me. I wish you sunny days, smiles, and low pain days. I wish I could say pain free but I don't think that happens for us. Manageable is more accurate. Every piece of advice I get, each word of encouragement, and knowing that I don't need to be alone any longer, has given me a sense of hope. TY.
 
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patricia314 replied to Anon_10089's response:
TY TY. There are so many wonderful people on this site. For the first time, I feel I have someplace to go for help. I have a wonderful Dr. but I believe that unless you experience all the symptoms, you truly don't understand no matter how empathetic and knowledgeable you are.

The next 2 months are going to be very hard on me. I'm glad I have support here. After that, I can take the summer to fight. I wanted to say "and get my life back" but I guess it should be start a new life accepting my limitations and fighting.

I've smiled so much more answering these replies then I have in a long time. TY. And yes, yesterday and today are warm and sunny finally in Chgo. Wishing you everything wonderful.
 
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booch007 replied to patricia314's response:
Patricia,

Good evening, rarely am on in the evening, but I have a post I want to write. I saw this and had to hug you again. You are not a victim! Get your education under your belt.....grab a staff/rod and poke this dragon in the eye!!

I think once you figure those triggers better and you learn to pace one a day. Like my laundry is all I would do. Sometimes not even folding......changed folding on a pool table (high) to a couch lower. to my lap. I change it around. ALWAYS listening to the muscles.

This was so overwhelming to me as a Type A, do it all also. I was working 3 jobs (ICU, Hospice and the stress lab) when I got hurt and never returned to the hospital . The new me began, a new path. That path changed everything about me.
Changed my friendships too.

And speaking about your friends, mine have also gone to the wayside in some ways. We are not dependable for a good time. I would beg out or then if out I can run out of gas, or can't walk back to the car. It is hard to explain, you close down, pull in. Life gets small.

I am OK with it right now. It all takes getting used to and accepting the change if you can, and if not, fixing it so you can hold on to what you feel you need to. I adjust so I can work full time, I pace the home arena and always pray I can get in the party or the grandchildren that I love.

You too will get there. This is trying and challenging. But some old man told me that anything easy is not really worth it.....
So, this is big for us, it takes alot of energy and work to be in a good place.

I praise a few things for my good place....sense of humor being one. Ability to talk to myself honestly and a good team to put my peices together.

I use distraction and music like a pill in my med box. They are added when I need them. Even this board helps lift me from pain as it is helping another and that is good karma...

OK Good luck. Next cheerleading seesion for YOU is this weekend...............LOL. Nancy B
 
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patricia314 replied to booch007's response:
Thank you so much. My heart breaks for each and every person on here, knowing what each of you are going thru. The good news is, I finally feel like I have a place to go where people really underdtand and don't judge. I've taken each piece of advice offered. I've been pacing myself, not feeling guilty over what I can't do, started back on my Vit. D, started a journel, am doing deep breathing, stretching in the morning and a little thru out the day, forcing myself to get in some exercise. Although my head is aching, the pain has been much more manageable since that horrible day Saturday.

My biggest stress is the estrangement of my sister which is killing me. I was crying so hard that I'd throw up. The therapist is helping me greatly with accepting that I did all I could and the matter is out of my hands. My brain is preventing me from thinking too much about the situation which is a god thing. When the thoughts pop in, they pop right back out. I guess the body has was of protecting us. My sister has a huge problem with understanding the physical pain I live with. Even when she saw the shots which would numb me from the waist down for 24 hours every week, done in a surgical suite, the reality of my life didn't register. Because I have a nice home, students I enjoy and who enjoy me, and the best husband in the world, doesn't mean I can't be in pain. I think it was too hard for her to understand and she found a reason to opt out. Since she stopped talking to me, I've spiraled downward at rocket speed. I need to get my head on straight so I can live as full a life as I am capable of.

Thank you for listening. Thank all of you for the love, support, and understanding I've been shown. I wish each of you good days.


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