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kuziee posted:
I was told last week that I have fibromyalgia. I have had pain in various areas of my body for years. I was a pretty reckless teenager, in several car accidents, broken bones, head injuries etc, in 08 I hurt my low back resulting in bulging disks and pinched nerves. Since then I have hurt all over. I have tried meds, injections, diet and exercise with no real relief. I have been to several drs over the years and they all came up with the same thing, my low back injury should not be causing this much pain, there for its because of my weight and mental health that is causing it. When the pain became unbearable yet again I decided to try again with another dr, after my first appt he said why hasnt anyone told you you have fibro? I have 17 out of 18 tender points that have been charted and unchanged since 09. I was relieved to finally know that its not all in my head and there is actually something wrong. My problem is I dont have any support, My family and friends are tired of hearing about how much I hurt, how tired I am, why I can't do this or that.I was hoping that when they knew what was wrong they would be a little more sympathetic to whats going on, but no luck. They all expect me to continue taking care of them and their needs. So I try and keep it inside and just keep going. I have become pretty isolated, keep to myself. I work as a hair stylist and I love what I do, but I am not sure how much longer I will be able to do it full time. I am only 40 years old and feel like I am 80 most of the time. I am starting yoga, water aerobics and I walk as much as the weather allows. Any suggestions to help me get my family and friends to understand that this is a real thing and its not in my head would be great. Also any diet changes I should incorporate would be greatly appreciated. I just want to feel good again. Thanks in advance to anyone who takes the time to read this and offer some advice.
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dollbug responded:
Hello kuziee and welcome. MiMi in NC. I only wish I could tell you that your family and friends will eventually understand what you are going through. But I do NOT think this is the case at all. I can tell you though that FM is real whether your friends and family understand it or not. I do hope you have a good doctor and now you have this group of FMers as a support system....and we do understand what you are facing every day.


It is hard to come to terms with the life that we have been given.....it can be quite tough at times, but there are ways that you can learn how to manage better. I hope you will check out the info here under *tips* and *resources* and be sure and read the *member toolbox* as well. I am sure you will find some good *tools* that perhaps you have not thought of.


You say that your doctor checked your pressure points. I am curious did any of the other doctors check them?


I would also like to know if your doctor checked your Vitamin D level as well. If not, then I would speak to the doctor about getting this done as soon as possible. Low Vitamin D can cause some people to have additional pain and it can also affect other illnesses as well. It seems like there are a lot of people who have low Vitamin D.


Drinking plenty of water each day is a good thing for me. Watching what I eat is also important. Getting enough sleep at night is really important as well. Staying on a schedule of sorts might also help. Learning how to pace, pace and pace even more is a good thing for us FMers as well. We have to learn not to *cross the line*, which can sometimes be very hard to do.


I wish I could tell you that you will be back to your *normal self again and will feel good*.....but I am not so sure that you will. I will though tell you that you will indeed find ways to manage how you feel.


A good way to start might be to keep a journal of your life....in the beginning. This might provide you with some helpful info about what might be causing some of the pain. (such as things you are doing or consuming- Be sure and chart your pain levels as well.)


I hope you will post often here, ask questions, make comments and/or suggestions. This is a good support group.


Take care and good luck.




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

 
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rudyandirmouse responded:
Hello kuziee and welcome. I am so sorry you have been DX'd with fibro. Like you many of us went years before a doctor told us what we had was fibro. And like you it was a relief to hear a name being put to our aches and pains.


Like MiMi I would suggest, if you haven't already done this, asking for your vitamin D3 level being checked. Those of us with fibro are usually low in D3. Getting it up to normal levels does a body a wonder of good and you can feel it making you less prone to pain.


A sure way to get friends and family to stop from talking about your current pain is to talk to those of us who understand it. So please feel free to come here each day talk about how your feeling and post on other posts and give a supportive hand to others who are feeling as you are.


As for being isolated, DON'T be! "IT" wants you to think of nothing but the aches and pain. I wants you to be alone, staying away from people and most of all in bed. Don't give it that. Get out, do things, yes even when you feel you can't. Be with friends.. take you life back! Every second you give away to "IT" is a day you don't own. I like owning my day.. I don't like being sick, even when I am. Some days I can jump out of bed, others I have to take my time. Some days are better than other. Some days I can do big things and others smaller things, but I do them and I feel better at night when I get back into bed having done my day MY WAY.


Try not to let this collection of illness keep you down or take away your life. You will have a life and it can either be good or bad. Rethink your illness and what it can and can't do to you. You'll be surprised to find, as most of us here have, it's not enough to stop you from doing your day your way.


Also you may want to get and neurologist's opinion about your aches and pains. Small Fibro Neurology is the root cause to fibro symptoms ( So I was told by my neurologist in December. ) Having a neuro guy now is helping me handle the DFN and peripheral neuropathy I have been DX'd with because of my horrific car accident as a teen. Much like you...


Please stay with us. There's a great bunch of caring and supportive people here.. everyone understands what you are dealing with because we all are.


Gentle hugs, Linda R
 
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missist replied to dollbug's response:
Hi Kuziee,

I was close to your age when I got fibro--after a lot of stress and also an injury at work. Also do have some disc problems and arthritis.

2 issues most a problem-- the actual pain & fatigue, and how people treat you. That is common to almost all of us.

In time you'll figure out ways to lesson the pain & live with it. I don't know anyone who has gotten rid of it. But many of us do lesson the problems.

The problem with family etc is I think partly caused by the general nastiness of society in general these days-- an attitude exists that if you eat right and diet right--you'll be well. This really is not true--but that's the way people believe.

Another issue is I think really a matter of respect for others. I noticed that there are those who get a pass no matter what happens in their life and those who do not no matter what happens in their life.

I think, although it is not really about this topic in general--I read a book just recently called 'getting off the niceness treadmill' and somehow it made me realize I was letting people treat me poorly by 'caring so much' what they think. if that makes sense. I'm not saying we should not love others--far from it-- but I am saying our respect for ourselves should not depend on what other people think.

If you are too tired do something with someone-- tell them, I'm too tired and I'll be staying home.

Learn to pace yourself and you'll feel much better--not perfect--but able to deal with what is really your responsibility. If you try to carry all that other people put upon you =including their nasty opinions--you'll collapse.

I hope that is helpful--I'm not at all saying be mean or treat folks as they have treated you-just treat yourself as well as you'd like them to treat you-- sort of a hard thing. I noticed nobody is harder on me than I am. I'll pray for you!

~ Mary
 
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Anon_10089 responded:
Hello-

I am sorry for what you've gone through. It is a step forward, I suppose, having a name for it.

The others have already given you good advice. Unfortunately, your story is a common one when it comes to your family's reaction. However, quite a few people here have had the experience that their family members came around and became supportive. Would they be willing to read information about FM. It's pretty widely recognized now as a legitimate disorder. In fact, there have been a couple studies published this years linking biological differences in our bodies.

And I try to look at it from their perspective too. We are saddened, angry, and frustrated from having to deal with this. We can't expect them to not feel the same. There is a point, though, where our loved ones should give us support.

It seems like many people here too have described themselves as the type of spouses and parents that before the FM (and after) were they types to "do it all". In my opinion (I emphasize my opinion) with or without FM kids and spouses should contribute to household work. It teaches kids responsibility and prepares them to be adults, plus it helps you.

The FM can get better but it will never go away. Your pain could be made worse if you try to keep how you feel inside. Nobody could live like that forever. If nothing else, you can use this forum as a place to find support!

--JR
 
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debrabrooks1960 responded:
Dear Kuziee,
Welcome to the FM family. We are glad to have you with us. I joined 2 years ago. I have never felt so welcome by a group of people that I have here. Everyone is so kind and helpful. I am sorry to hear things are so hard for you right now. Things will get better. I had a hard time with my family at first. I finally printed off anything I could and let my family read it. It they would not read it, I would read it to them. Luckily they started to understand. You will have to try many things before you will find out what works for you. I have cut out sugar and white flour. I do eat whole wheat bread, but I try to limit it to a small amount. I am trying to eat mostly the things that God put on this earth and man has not done anything to it. I have lost 18 pounds since January 1st. My pain level has went from a 10 to a 3. I still have bad days and I can tell when I cheat and eat sugary foods, my pain gets worse. Sometimes that homemade cookie is just too hard to pass up. I have also tried walking more. I am proud if I just walk a few extra feet each day. I have other medical issues other than fibromyalgia. So walking is hard for me.
Be sure to take time to do something nice for yourself. Start a hobby if you do not have one. Read a good book. Just take time for yourself and enjoy that time. A hot bath or shower is a wonderful way to pamper yourself and help with pain. Remember to pace yourself and let others do things for you. It was hard to let family clean the house for me. I had always did the cleaning. Now I do what I can and I let others help me. I do work full time which is very hard at times, but life is good. Luckily the good days make up for all the bad days. Also just tell yourself on bad days that tomorrow is a new day to feel better. Than make sure you do something fun to make it better.
Read everything you can on Fibromyalgia. Knowledge is your best friend. Please let us know how you are doing. Ask questions. That is what we are here for. Soon you will be helping other new members. That is what is so wonderful about this website. Everyone shares the love and gives the best soft hugs!
Take care and you are in my prayers.
Debbie
Your not over the hill until you are under the hill.
 
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kuziee replied to dollbug's response:
Hi MiMi,

Thank you for the tips and advice.

I had the tender points first checked in 09, by a work comp Dr. I was not told that I had 17 out of 18, nor was I aware that fibro could be the cause of the pain and discomfort. Then again by a pain specialist in 2010 with the same results 17 out of 18, they talked a little about it possibly being fibro, but then changed the dx to my low back injury.

I have not had my vitamin D checked yet, I am going to ask to have that done this week at the next dr appt. I did start taking a multi vitamin and extra vitamin D.

I have also started drinking alot more water. One of the meds makes my mouth extremely dry all time. I am trying to cut back on coffee (my life line)

As for sleep, that still eludes me. I am taking 2 different things to help with that and I still wake up every few hours, or every time I move. I spend alot of time in a fog, but amazingly I function fairly well. I am able to work 40 hours a week as a hair stylist. I think after hurting for so long, I have learned to keep moving because once I stop, its over and I'm down for the count.

Thank you again for the tips and advice, I do greatly appreciate it
 
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kuziee replied to rudyandirmouse's response:
Hi Linda,

Thank you for taking the time to offer some advice and tips to improve things, I appreciate it.

I am trying not to let this dx run my life, I know in time I will have my life back. I just have to learn to make some adjustments and listen to my body.

Thank you again!
 
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kuziee replied to missist's response:
Hi Mary,

Thank you for taking the time to reply. I appreciate the tips and advice given.

I have been taking care of my family for the last 24 years.( yes I started young) I have always done what I could to make their lives easier, but now it's my turn. I have given them all info to read in hopes that they will understand what I am dealing with.

I am slowly learning to pace my self and have started to say no more often.

Thank you again
 
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kuziee replied to Anon_10089's response:
Hi JR,

Thank you for taking the time to reply, I really do appreciate it. It made me look at things a little differently.

I am thankful that my children are grown and on their own. I could not imagine what it would be like if they were still young.

As for my spouse, He will need some time to adjust to not being catered to. He has however began helping a little more and also is reading about FM which is wonderful. Baby steps for him is all I can ask for.

Thank you again for taking the time to reply
 
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kuziee replied to debrabrooks1960's response:
Hi Debbie,

Thank you for taking the time to reply. I appreciate the advice and tips.

I also have a hard time letting go and having someone do something for me, that I know I can do for myself. But as I am slowly learning to listen to my body and understand the warning signs I am starting to ask for more help.

I have been reading about FM and learning a lot. I also keep a list of ? to ask the Dr about at my weekly appts.

I have began cutting out sugar and carbs from my diet. I have also started eating more fruit and veggies and drink a ton of water.

My work is another story, that I am also trying to figure out. I am a hair stylist and have spent years building my clientele. I have so much invested in my career that it is going to be hard to cut back my hours with out losing some people. I currently work 6 days a week, as a salon manager. So I have that to deal with also, giving up that position is not something I am ready to do just yet.

I am hoping that all the meds, and lifestyle changes I am making will help. I know that I need to continue moving and also pacing myself, listen to my body and ask for help when I need it.

Thank you again!
 
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nononsenselady replied to debrabrooks1960's response:
Hi Debbie and Kiuziee,

I am very late reading your posts. I am on a month long vacation in California. We usually go to Florida but I always feel so bad there. Really achy, tired and lots of pain. I think due to humidity. It took me 8 years to figure this out! So we came to California. I felt really good the first 2.5 weeks we were here. Then gradually felt worse. Debbie's comments about diet gave me one of those "aha" moments. I have eaten like a pig with lots of bad food. I realize now that is why I have started feeling worse! So Debbie's comments about diet are very important Kuziee. I would say stay away from starches and cheeses. That is mostly where I have sinned. Plus I have not eaten enough vegetables. Just a thought. May be not true but it sure makes sense to me.
Laurie


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