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    Old 06-08-2009, 11:20 AM   #1
    fibromama
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    Anyone having or have had similar experience?

    My mom has fibromyalgia and a very stressful daily life to go with it.She has 2 severely autistic and retarded children who cause a lot of stress on a daily basis as well as an inability to rest her body.Anyhoo,for the past 6 days she has been having severe charlie horse type cramps in her legs,especially her right leg all the way from her groin to her toes.The first "attack" had her screaming and wailing so loudly that I rushed the 45 miles from my house to hers for fear that she was dying....it sounded like she was dying.She was having cramps and nerve pain that came on like labor contractions.This went on for three hours that evening.She tried to walk....tried anything that might make it stop.Afterwords,her nose,lips,cheeks,head and hands and legs were numb with no feeling in them at all.She was sweating profusely to the point she thought she was having a heart attack.She was very scared as were me and my sister.She is only 49.For the last three days,her legs have been in a constant state of charlie horse or leg cramp and have been very painful.She also has twitches that are so bad it is very much like a seizure and the pain seems to be a little better after a seizure.The other night she had another attack like the one that made me rush to her house and following the attack had a big seizure.She has been crying for 6 days and not able to sleep.She takes hydrocodone for pain which only takes the pain down a few notches,but doesn't provide much relief at all.In my 30 years of living,I have never ever seen my mom cry over pain,so I know it must be pretty intense for her to be crying for six days.Not to get too personal,but she also has not had a BM in 6 days either,yet her tummy does not hurt or anything.Weird!I got her some icy hot and that seems to help a little as well as the pain pill,but with the special needs children,she is constantly being required to move and walk on her cramped legs,I wonder if this is part of why this flare up is lasting so long.She has had fibro flare ups before but this pain and situation is new for her.She had kidney cancer about 15 years ago,and so only has one kidney which limits the meds she can take.Her doc tried her on Cymbalta,but it made her deathly ill and with the kids she can't wait the 2 weeks it takes for the side effects to lessen.Oh, and she also has lumps appearing on her calf behind her knee that are about the size of a golf ball and painful to the touch.....this is new as well.Her knee is also very painful and burning.I have tried looking up these symptoms on google and fibro websites,but they are very vague,I thought it best to talk to fellow sufferers and see if anyone else has experienced this.Please let me know so I can tell her.It really helps her when I can tell her she is not the only one,because she gets scared.She says that fibro feels like there is something very wrong with her of a fatal nature.Thank you in advance for any words of support or encouragement.I forgot to mention that she also has osteoarthritis and degenerative spine disease.Maybe these could be aggravating her FM?

    Last edited by fibromama; 06-08-2009 at 11:48 AM. Reason: To give more info.

     
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    Old 06-08-2009, 11:34 AM   #2
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    Re: Anyone having or have had similar experience?

    When was the last time she had blood work?

    Leg cramps- check Vitamin D levels, and also take calcium/magnesium. She might be able to start taking Vitamin D supplements today, but definitely get her levels checked by a doctor. They might also look at her B vitamins.

    Behind the knees- those sound like Baker cysts.

     
    Old 06-08-2009, 11:40 AM   #3
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    Re: Anyone having or have had similar experience?

    Hi there!!Thanks for responding.I have researched alot about fibro and found that all D,B complex,and Calcium play big roles.I got her all of these and took them with her for support and she stopped taking them because she thought they were not helping.I recently got her to start them again,but she is waiting until this flare passes because she is having nausea to go with everything.She recently had labs about two weeks ago and there is something they want to talk to her about in person on the 22nd of this month.Hopefully nothing serious as her appointment is that far out.We shall see.Thanks for responding!!

     
    Old 06-08-2009, 11:52 AM   #4
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    Re: Anyone having or have had similar experience?

    She needs to keep taking the supplements for them to work. So I'm not sure if she doesn't understand that they will help her pain, or if she's not in that much pain, or if she like to be in pain!

    I mean, if she's already having nausea, what's another supplement? Especially if it's one that is likely to help.

    We can only present them with the info. The choices they make are theirs. That is nice of you to help.

    Oh- and I wouldn't wait until the 22nd for results. Ask for them over the phone.

     
    Old 06-08-2009, 12:19 PM   #5
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    Re: Anyone having or have had similar experience?

    Thanks again fibrostuff!My mama is very stubborn,but I think that I got the vitamin thing through her head.At this point the pain is sooooo bad that she is willing to try or do pretty much anything.I even tried mixing a magnesium rub for her to use on her legs and back and had her apply that.She is willing to try even homeopathic remedies which is something she has been against all her life.I will try to get her to call her doc about those results.She is assuming it must not be serious if she is waiting that long to tell her,but I think it may be something that could give her some solutions to her pain,like a deficieny or something.I have gotten her to drink more water as well as I have heard that dehydration can be a contributing factor.

     
    Old 06-08-2009, 02:19 PM   #6
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    Re: Anyone having or have had similar experience?

    forget about the dr if that bad I would go toER

    there are blood clots in legs that can cause pain

    not everything is Fibro related, we all have to remember that
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    Old 06-08-2009, 03:48 PM   #7
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    Re: Anyone having or have had similar experience?

    Apple has a good point. But I thought she has seen the doctor and that is when he took the blood tests?

    So the question is- did the doctor see her in this pain?

    And call that doctor for the results! You pay for them, they're yours!

     
    Old 06-08-2009, 04:59 PM   #8
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    Re: Anyone having or have had similar experience?

    We were both worried about blood clots in her legs,but there were some things that she used to rule that out.The pain is like a charlie horse that is really bad and won't let go and when it is not cramping feels like a charlie horse feels right before it cramps up and that there was simultaneous nerve pain radiating down both sides of her leg.In the days to follow she has been getting some relief from icy hot,but not completely.I am however still very worried that this is not fibro,but something else may be wrong.I am scared at this point and she has not had an appetite or a BM in 6 days even with taking 4 doses of Dolcolax....this cannot be good.She is eating and even tried eating a high fat meal in hopes of going to the bathroom,but nothing.Between this and the leg pain and constant cramps and two seizures I am worried and she irritates me because she will not go see a doc because she is afraid to leave the kids lest they be upset.She has had flare ups before but these are all new symptoms.I don't really like her doc....she is only in Mon. and Fri. and her nurses are rude and uncaring.She is taking tons of painpills...about three to four a day ,plus muscle relaxers and icy hot and she says her pain is still a level 12 on a scale of 1-10.She is crying and very emotional which is not like my mom.I DO NOT KNOW WHAT TO DO!!!!

     
    Old 06-08-2009, 05:27 PM   #9
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    Re: Anyone having or have had similar experience?

    I still think GO TO THE ER

    FIND HELP WITH THE KIDS---THAT NEEDS TO BE A MUST

    Does she belong to a church, maybe someone from there could help out or maybe there are some agencies that could help. Not sure who, but a church would be my first call and they should be able to give you a list.
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    Old 06-08-2009, 07:13 PM   #10
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    Re: Anyone having or have had similar experience?

    I would ask about a colonoscopy, I agree with vitamin D, hydration, potassium and sodium and calcium can also play a role in cramps. I too agree about the possiblity of closts. and I agree physicians can't dismiss every pain due to fibro. If she is suffering so badly, can she go to the ER?? Can her pcp refer her to some specialist??? Have they done any bloodwork. Get results and get them explained. If he can't explain it, I'd ask if she does not have fibro and she had these issues, what would you do. I actually had fibro taken from my medical record when I had trouble getting treatment. Good luck and thanks for being your mom's angel

     
    Old 06-09-2009, 12:34 AM   #11
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    Re: Anyone having or have had similar experience?

    I experienced those horrific cramps about a yr ago. In both legs, starting in the toes working up through my buttocks. I cried for hours! It felt like I was paralyzed and the pain was excruciating! It was the worst experience of my life!! After 4hrs, the pain and cramps slowly subsided. My recommendation, along w/ calcium - would be also to check potassium levels. That was what caused mine and fibro and lupus deprive us of our precious vitamins. Low potassium can cause cramping. As for the BM - or lack there of, I am not sure. She needs to go to her dr. right away. Good luck!

     
    Old 06-09-2009, 06:47 PM   #12
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    Re: Anyone having or have had similar experience?

    With her kidneys, djd etc, would she go to the er? If I was suffering like that, timing can be critical with blood clots etcs.
    I'm with apple collector, I think she is at the point of going to the er for some relief and work up.

     
    Old 06-10-2009, 06:52 AM   #13
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    Re: Anyone having or have had similar experience?

    I would DEFINITELY seek medical help, at the ER if her Dr is not in. Not having a BM in that long can cause toxins in the body to build up and that can created a lot more problems! Good luck. Please keep me posted on the outcome. Bless you and your family. Its good talking to people that understand!

     
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