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Hi everyone, I am new to fibro...

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Posted 11/20/2012 8:01 AM (GMT 0)
Hi everyone, I am new to Fibro. I was dx about four months ago or longer. I have read alot about it but still feel like i am missing something that might help. I just turned 30 couple of months ago, I have two young kids. So my first question is how do you deal with the flustration of knowing you can't do what you use to do?

 

 I just started a part time job about the other night I came home crying because I hurt so bad. How do you work? I am so tired before I get to work and then work a few hours and feel like you just can't move anymore because you hurt so bad.

 

 I also get the "pins/needles" feeling in my foot and goes up my leg. Sometimes it gets so bad I can't really feel my foot. My foot kind of drags a little after loss of feeling. I also get it in the middle of my back and side. Does anyone else? Also with that where I get that "pins/needles" feeling if I have anything hot on it or around it it feels like its on fire. 

 

I have the usual pain everywhere else but it mostly effects my right leg.Do yall get sever leg cramps? Mine feel like the heel of really high heels are walking on my legs. I keep looking for bruising but there isn't any. But now you rub my legs (not hard though) you can feel knots all the way around my leg.

 

 My dr sent me to a Nuerologist (because he thinks it may be more to it) and first test was what I call the stun gun test. The shock the living daylights out of my legs (This test "doesn't hurt that bad"). I couldn't walk for about two days. My muscles would spasm so bad that it would almost "lock" my leg in place. (I know wierd). Anyway the second test he wants to do is stick needles in my muscles and "kind of" shock them. Has anyone done this test? How bad is it truly? My family dr said to call and see if they would give me something he

 

 

Post Edited By Moderator (getting by) : 11/20/2012 4:30:50 AM (GMT-7)

Posted 11/20/2012 11:33 AM (GMT 0)
Hi Shellmomof2,

I gave your post a title, but it looks like you didn't finish posting. Your last sentence doesn't have an ending. That is the best I can explain it.

I hope that you are feeling better. Please do check out the first thread on the forum called "fibro 101". It is full of a lot of great information.

We do understand what you are going through. Post, read, what ever you can do. It all helps.

Take care and have a good day...

Hugs, Karen
Posted 11/20/2012 1:08 PM (GMT 0)
Well honesty for some reason that was only about have of my post. I don't know why it only posted have of it. I will try to post it again later. I know the symptoms. I keep reading them over and over but some things don't add up and was hoping someone could shine a little light on if they have it to and what helps them. Anyway I think I am more frustrated than anything. I feel like my kids shouldn't see me like this. My daughter is 7 and helps me cook, clean, and some just get up. She shouldn't have to do adult stuff already she is just a kids. Anyway like I said I will re post later. Not a good morning so far.
Posted 11/20/2012 1:27 PM (GMT 0)
I am sorry that your morning isn't good. I hope that it gets better. I know you feel your daughter is too young to be helping you, but beleive me, it is good for her. She will learn responsibility early. That will make her a good person. I think, anyway. But I see your point. One day at a time, that is all we can do. You will be feeling better I am sure. Take things as they come. Keep posting. I look forward to the rest of your post when you feel up to it.

Take care...

Hugs...
Posted 11/20/2012 4:16 PM (GMT 0)
Welcome! Hope your day is less pain than normal!

No answers to your questions, I am afraid. Each case is so specific, that you have to try to figure out what works for you and your situation. I have never been a neurologist, but I do have lots of circulation issues and pins and needles and semi-numbness. I lose balance easily. The best thing I have found for that was to keep my weight down (which is a problem right now) and keep exercising (also a problem).
Posted 11/20/2012 11:18 PM (GMT 0)
Sounds like a problem with a compressed nerve in your back causing the leg issue.
Posted 11/20/2012 11:49 PM (GMT 0)
Hi Shellmomof2, I guess I'm one of the few men out here. Sorry to hear about your Fibro. Count it a blessing you have a young daughter with a willingness to help Mommy! I'm a bit older with several grandchildren and love it when they say, "Papa, want me to do it?". It is difficult to rely on others but a blessing when we have others to rely on! I was wondering about the pins and needles thing with severe burning in my right leg, mostly upper outer thigh. Anyone know of something that will work for relief? That is one of several issues that shuts me down right away and I look for the nearest seat! I hate it when I'm out at Wal-Mart and not near a bench. I hope you have the best night possible. This is a great forum, I haven't posted a lot but have learned a lot!
Posted 11/21/2012 6:45 AM (GMT 0)
Shellmom- welcome to the fibro forum!! I so sorry to hear how bad your pain is. It does sound like your having frequent flares and chronic pain. I remember those days with young children and working. Not easy at all. All your symptoms are the classical fibro pains. I was wondering if your Dr. has talked with you about medication for pain. There are several out there that helps the nerve endings that you describe. It's very common to have frequent muscles spasms. I have found some helpful things for mine. I take magnesium supplements for them. It took about a month for results, but I dont have them very often anymore. Heat is my best friend. It relaxes my muscles a great deal.

If you could read books on fibro it would be helpful for you. I was amazed what I learned from them. If you could visit this forum frequent it will be very beneficial to you. I was never really told how to manage my from from my Dr's. It all came from here. I came to this site in terrible shape myself and crying. I began to read other post daily and learned how to manage my from from this site. Your fibro doesn't have to control you.

You might have to look into some changes at home to make you more comfortable. You might have to do different activites with your Daughter. Things like playing a board game or watchng a movie together. Try not to over extend yourself to things. I had to learn to say no I can't help. Stay away from unwanted stress. Stess is will set off the pain very quickly. These are some of the things I learned here and my books. They seem very simple, but valuable tools.

I am happy to say that I am doing great with my fibro. It has taken some time to learn how to mangage it, but all worth it. I try to keep my treatment simple because I am very sensitive to meds. I hope I was able to help yo some.

Post Edited (ak angel) : 11/20/2012 11:49:32 PM (GMT-7)

Posted 11/21/2012 8:23 AM (GMT 0)
Joy: They did an MRI on my neck and back. It was "normal" with a slight pulling of my muscles. I don't know.

Thanks everyone. I haven't had time today to repost the rest of my questions and rant if you will. Lol.. After about the fourth time trying to walk out the door to go to the car I looked at my husband and asked "is my head attached? I don't want to forget it too..." The last time I came in the house to set out pork chops so my husband could cook them for dinner. Got in the house and completely forgot what I was going to do.. Needless to say we had leftovers.

Tim: I get really bad pins and needles in my leg and on my back. The first time I went to see the Nuero dr he said put capcation (sp??) cream on it. Something about it will deaden the nerves. Anyways did that for a little while but after a while I just became a pain in the butt to try and get someone to rub medicine on my back when every little touch would bring tears to my eyes. I know everyone says take a hot bath or shower for you muscles, I can't. The heat of it makes my legs and back feel like it is on fire. On really bad days you may see me with no pants on. Lol. My husband doesn't mind but when you get a surprised visit from your mom. Well that is a whole other story.

Anyway, I am more of trying to figure out how you deal with the flustration of being able to play softball on an adult league and practice softball with your kids to sitting and feeling like a bad parent. I know I'm not a bad parent but I do feel like I'm letting them down for not knowing the fun loving happy go lucky person I was before this. My husband tries to tell me but I am his wife and don't listen to him. Lol.

I am taking meds for my Fibro. I am finally on Lyrica. I tried Savella but after I went to the dr and my bp was 205/126, he took me off in a heart beat. I also take Cymbalta. I also take 2 sleeping pills that don't really work but when they do finally kick in I do get to sleep. I am on muscle relaxers for the spams. I am on a joint pill (simular to celabrex). Which has helped alot with the hot the cold weather that we get. It really doesn't have anything to do with my fibro but does make my knees and shoulders feel better. I have a restless leg pill. Then thyroid and bp pills. LOL.. I think that is plenty. I have a hard enough time trying to remember to take my pills.

How many of you work? If you do work what do you do? I tried to talk to my dr about it and he kind of laughed and said "I really don't know what to tell you on that". No help. So I got a part time job being a photographer. I love photography but the company that I work for has you walk around the store (grocery store) and try to get customers. So it is alot of walking that I didn't know about when I hired on but not it is about to kill me.
Posted 11/21/2012 4:12 PM (GMT 0)
Hi Shellmom,

Welcome to the Fibro forum!  This forum is definitely an invaluable resource as you try to adjust to your life with Fibro (well at least the diagnosis).  I am 30 as well.  I was diagnosed 6 years ago.  Thankfully my diagnosis came fairly quickly, only after 8 months, but my symptoms came on like a ton of bricks.  I woke up one morning and my body starting failing me.  I went through many of the tests you mentioned.  I had the EMG - the one you are talking about needing next.  It was a pretty painful test and my muscles really went crazy after that.  I had it done on my neck/spine and arms.  My legs weren't terribly effected by the Fibro yet.  However, a few hours after the test my legs joined in on the fun.  I then had numerous brain/spine MRIs and all neurological conditions were ruled out.  I then went through at least 10 blood tests every week to continue ruling out rheumatological, infectious, bacterial causes... I refer to that time as my Human Pincushion Days.  I saw just about every specialist under the sun, had so many tests done and FINALLY I got the diagnosis.  For me the pain slowly set in, it was all the other symptoms that started - numbness, anxiety, IBS, reflux, etc.  One day my brother touched by back and I jumped through the roof in agony.  It felt like he drove his whole fist into my back and he said he tapped me with one finger.  That's when we seriously began to look at Fibro as the culprit.

I just had my first child 7 months ago and it's definitley hard.  I have looked for many resources on raising children while suffering from chronic conditions, especially chronic pain.  While everyone agrees it is difficult and you can't do everything.  The number one take away is that you have to put yourself first and make sure you take care of yourself because if you don't do that you can't take care of anyone else.  This is a very hard lesson for me but I am trying my hardest.  Also, everyone has said that the children grow up to the be the most caring, well rounded and empathetic kids, young adults and adults.  They will see you as their mom and love you for you and not know any different.  I am still getting used to this concept as well :)

I not only have an infant at home but I work full time and I do not take any medication to treat my Fibro.  While each person is different with their abilities with Fibro I have decided that I do better fighting through the pain than I do on medication.  I am a full time paralegal and I have found that for me working is the best thing to keep me active and living life.  At times of major pain and flares it is difficult but I have only had to miss work a handful of days since I was diagnosed 6 years ago.  When the Fibro first set in I had to take some time off of work because I was very unwell.  It seems like the Photography job is good as a part time job.  Walking is one of the best things for Fibro as well as keeping moving.  I understand that the exhaustion at the end of the day may be a lot, but we can build up our stamina and get used to doing certain things. The idea is to ease into new things and not over do it.

Posted 11/22/2012 9:05 AM (GMT 0)
Shell mom - I don't work anymore due to chronic health issues. I know there are many here that does work. I had to go on disability about 3 years ago. I don't regret it at all. Maybe down the road I will be able to do some kind of little work.
Posted 11/23/2012 4:32 AM (GMT 0)
I've got more than fibro wrong with me. I had to stop working back in May this year.
Posted 11/24/2012 3:39 PM (GMT 0)
Hi, Shellmomof2, and welcome!  I used ot have bad problems with leg cramping.  That's terribly painful...for sure!  I started taking malic acid/magnesium supplements that that help quite a bit but when I added calcium to the mix, the cramping went away.  I was surprised about that so I googled it and low calcium can cause muscle cramping! 

 

You might try gentle massage too.  I massage my own legs but when you massage, be sure to move up the leg...not down.  You want the blood to head back to the heart.  This has helped me, too.

 

I also was given a muscle relaxer this past winter and it has made a significant difference in all of my back pain.  So this might be something to ask your doctor about.  Something that simple might be able to let you stop some of the other meds.  I take ibuprofen with food, Tylenol, malic acid/magnesium supplements, vitamin D3 supplements, and Robaxin (the muscle relaxer) to help me be in control of the pain and fatigue of this illness.  I don't take any of the usual drugs for fibro.

 

If you can get your leg issues under control, walking would be good for you...if you could walk for about 20-30 minutes and then sit for a good 15 minutes doing something else to help out.  Constantly walking for long periods of time sure cause me more pain.

 

Be sure to read Fibro 101...the first thread on the forum.  There are good links about fibro and you can learn a lot there, too.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine

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