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Has anyone with FM experienced this?

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Fibromyalgia
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Posted 6/8/2009 7:08 PM (GMT 0)
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 the FM?
Posted 6/8/2009 7:44 PM (GMT 0)
Hi, MamawithFM, and welcome!  We can get leg cramps.  Some have it worse than others.  I used to have the cramping really bad and my doctor prescribed quinine tablets and they helped me immediately. 

 

Then, I was diagnosed with osteoporosis and started taking Citracal twice a day.  Once I started taking the extra calcium, the cramping went away!  I looked it up and a lack of calcium can cause cramping.

 

I'm not sure what the numbness is about.  I will get some tingling and a little numbness at times.  Sometimes my chin and lower lip will get numb but the feeling comes back shortly. 

 

I haven't had knots the size of golf balls, but I do have knots all over my body.  This is like myofacial pain syndrome.  Some doctors think Myofacial pain and fibromyalgia are actually the same illness.  Perhaps this is what is going on with your Mom.

 

The stress she is going through can definitely cause more pain.  I have an autistic nephew so I do have a little idea what she is going through.  It has to be so difficult for her.  I hope she has some help with those children.  She does need a break.

 

Be sure to read the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibromyalgia there.  Maybe you will find things that you can share with your Mom.  Better yet, see if she will come to the forum herself and ask questions...if she has access to a computer.

 

I'm so sorry she is going through all of this.  She is very fortunate to have you.  I hope you can find some answers for her.  I hope she has seen a doctor about all of this.  It is important to keep them totally informed so they can help.

 

I'm so glad you found us and I hope you get many responses to this thread.  We really do care about you and your Mom.  Hope to hear more from you soon.

 

Sherrine

Posted 6/8/2009 7:54 PM (GMT 0)

I'm sorry your mother is going through what she is, but what I do see is a mom with 2 Autistic kids and trying to do everything herself, but she does have you and you are you source of strength.

My son gets tested for his mild Autisim this summer before he turns 18 and I can't do anything else to help him.

HARA

Posted 6/8/2009 8:33 PM (GMT 0)
Thank you so much Sherrine and Hara for your responses.In response to the myofacial,we do believe that she has that as well.The stress has been awful for the last year and a half in particular(that is a whole other long crazy story) which seems to have caused her FM to worsen.She does not allow anyone to take over the care of the kids because they get rejectory and violent towards her and she can't handle that emotionally.Autistics have no real sense of love or devotion...whoever provides for their needs is who they are attatched to.I do a lot for her....as much as I can to reduce the load such as grocery shopping,house cleaning on occasion,running errands,and online research as well as daily phone calls and anything else I can do.I am her only support as her husband is a total jerk.I just spoke with her on the phone and convinced her to leave the kids in their rooms and lay down and stay off her legs and relax her muscles and while she hates doing that ,she thinks it is helping.She is only getting up to feed the kids and take them potty.They have videos and toys in their rooms so they are not locked in there with nothing.Thank you again for all of your support and I will keep you posted.
Posted 6/8/2009 9:29 PM (GMT 0)

I don't see how he was being a jerk to her by telling her to go lay down and try and relax a little. Autistic kids usually do quite well by themselves playing in their room. I did say 'usually'.

My son is an awsome person. He likes to play computer hand-held games and can pretty much take care of his own needs now, eventhough he does need reminding...lol

How old are the kids?

Her hubby should be taking care of them also when he's home.

HARA

Posted 6/8/2009 9:54 PM (GMT 0)
No,no,no.Her husband is a jerk period! I told her to go lay down and rest and relax,not him.She feels guilty putting the kids in their rooms,that is why she doesn't do it.The youngest one is a 4 year old little boy and he is the worst of the two....he screams and yells and is very very violent towards my mom and everything around him.She cannot control him for anything!!He has been hurting my mom's legs on purpose and scratching and spitting on her for the last 6 days and will probably be worse when she is feeling better because she put him in his room.The oldest is 12 and she is pretty much self sufficient like your son....she doesn't have the same severity as the 4 year old at all.She enjoys drawing(and is very talented)and reading her story books and playing with her favorite stuffed poodles.As for my mom's husband,he has just been ignoring her for the most part outside of a few empty"how are you"s.He does not sit or lay with her or even talk to her.It seems to really irritate him actually.My sister helps with the kids as do I when I am over there.
Posted 6/8/2009 10:40 PM (GMT 0)
Oh OK, one of those jerks.

Posted 6/8/2009 10:48 PM (GMT 0)
Hi Hara,

I'm sorry to hear your mom has been going through all of this. It can be soooo scary. I work in the health care field. It sounds like she really needs to be checked out. Leg cramps can come from a variety of things including being low on potassium, calcium. With all of her other medical problems I think it would be best for her to be seen, get some blood work to see what is going on. The seizure like activity is also worrisome.....

If you ever have a question if something is an emergency, think someone is having symptoms similar to a heart attack, etc. the best thing to do is seek medical attention immediately.

I hope she gets to feeling better!

Posted 6/8/2009 11:39 PM (GMT 0)
Yes!!One of those kind of jerks!!!He is a real @#$#%^&!!!!!Also,thank you luvspringflowers for your response.She does get very very scared.Sometimes she thinks she is dying or that her kidney cancer is back or that she has a heart problem.She is very stubborn as I said earlier in response to someone else,and will not go to the doctor when I think shew should.The night I rushed to her house she refused to let me call an ambulance for her even though she was terrified about what was going on in her body.She used to be a medical assistant,so I assume she knows what she is doing???She has had labs recently and there is something that thery want to talk to her about but we are assuming it must not be serious or they would have her in before the 22nd of this month.I have gotten her to take vitamins(C,B-COMPLEX,CALCIUM AND D),but she stopped taking them for a while thinking they were not helping.She is now back on them along with drinking more water and eating bananas for extra potassium.We will see what the doc says on the 22nd.Thanks again!!
Posted 6/9/2009 1:33 AM (GMT 0)
I've had leg cramps in the past and increasing my water intake would usually help alot. Good Luck!
Posted 6/9/2009 8:54 AM (GMT 0)
I haven't had leg cramps for a few years now. Well, last night, uh rather morning the worst leg cramp I have ever felt in my life.. It woke me out of a sound sleep.

HARA

Posted 6/9/2009 1:33 PM (GMT 0)
Mama-- You are on the right track with the vitamins except I would push Magnesium 500-1000mg (this will help alot with leg cramps but also with her constipation too, which is prob due to the pain pills) and B complex (nerve pain, depression, fatigue) and anything to increase her potassium (leg cramps). Massage too!
FM attacks our most vulnerable places and my guess after years of being on her feet as a medical assistant, that is where it is choosing to zap her. Poor lady. And she is so depended upon still!
I know that she is wary about accepting respite care for her sons but it is better to set something up now than when she cant get out of bed at all! Maybe there is even someone who will come (behavioral therapist?) that will help with some of the kid's behaviors and your mothers needs. There must be a middle ground.
Good luck! Let us know if we can help, that is why we are here. She is very lucky she has you!!!
Posted 6/9/2009 2:47 PM (GMT 0)
Thank you all so much for the replys and the the care and worry.I have told her asbout the wonderful people on here and it has been such an encouragement to her.She often feels very isolated and alone.Even though she has me,I live 45 miles away......I am over a lot to help with whatever she needs,but it is not the same.I spoke to her last night and she feels like the cramps and nerve pain are trying to recede.I really hope so.As for the magnesium,I have talked to her about that as I have seen this many times on the fibro web pages.She only has one kidney and is very scared of taking anything more than she is taking,but she has agreed to talk to her doc about it.The kids are something that she is going to be really difficult on.In the past few days she has had my sis let the 4 year old out of his room,etc. and now he asks for my sis instead of my mom and said"Nicole is mommy".She does not handle this well,even though it is a part of autism and what they do,emotionally it is too hard for her.So calling in someone else that would cause these problems is out of the question for her.If it were me,I would just realize that this is part of what they are and you can't control everything.I just wish she could let these kind of things go and get some help...it is all too much with how severe they are.We shall see in the future if she can let go of these things and accept some help with the kids.Anyhoo,I will keep you all posted on how she is doing and what the doc says on the 22nd.Thanks again for the support.Even I take comfort in it....it is a powerless feeling when someone you love is so debilitated and in pain and there is nothing you can do or nothing they will let you do!!
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