I am finding my legs getting weaker and weaker.Sometmes giving out…Hip as well…Does anyone else have this happen.I tried walking across the pasture Sunday and was exhausted and sweating like a pig and the next day…Well my legs were sooooo sore…I want to know if this could be DD or not…I try to exercise my legs but I am unable to do what I used to do …
I have that too. I am so sorry you are feeling so bad. My knees get really weak and then the pain starts shooting down them. I always have the pain in the low back. I usually will take a cool epsom salt bath. Only heat at first when you put the salts in…then run cool water. This help my swelling a bit. Good Luck honey, I hope this helps.
Hugs, Christine
Elaine,
The same thing is happening to me and I want to know the same thing. I think it wouldn’t be a bad idea to get tested for MS just to be sure.
Hugs and spoons,
Pamela
Thanks for the suggestion, Christine, but I haven’t been able to sit in a tub for years. No way I’d ever get out without calling the fire department. Wish I could afford one of those tubs with a door. I’m sorry you know what I’m talking about. It is awful.
Hugs and spoons,
Pamela
My legs too are getting worse. They are changing and I am helpless to prevent it. They are getting weaker and heavier from my hips down both legs to the bottom of my feet. I have sharp stinging pains in the upper and inner thigh area that make me about jump out of my chair somedays. I stretch my legs all the time. But I am noticing that when I setting at my desk at work I have to set at the end of my chair for my feet the touch the floor, (yes I am short), but somehow end up in a position to where my legs have drawn up and I am leaning on the tips of my toes, its very strange I have the same problems with my arms, I cannot relax them, whenever I am supposed to be relaxed with my arms beside me they end up curled up around my chest area and it looks like I am a grasshopper or something, again I am unconcious of it until someone points it out to me.
And another thing I have recently been noticing that I my whole body jerks at various times and when that happens I feel like I am on the verge of a some kind of either whole body spasm, or siezure, which I have never had before so I am not sure, its like the body is gearing up to do something I will not be able to control.
I don’t know if that makes any sense but I will be setting up and appointment with the doc soon. I have nneglected myself because I was focused on my daughters wedding, but now that is over I have to get this together before I really crash and burn.
God bless
Brennie
I have the same things happening too Brennie.
I was sitting in my daughters van when we went to pick up some things yesterday and I had the worst sting in
my foot…On the top of my left foot I have a large mass(I’m guessing it is a large diffuse lump) but it was so sharp I really thought a wasp had gotten in…But there was nothing there and I just know the “things” are getting more active now…I am just a mess now and the Gabapentin isnt helping anymore…
Brennie,
Check into Myoclonis or Myoclonic Seizures. I know of several ladies who have those.I hope they will respond to your post, but they have been absent from all of the groups recently.
Hugs and spoons,
Pamela
Thanks ladies for your input. I have been so distracted by the wedding, I haven’t taken very good care of myself. The wedding, by the way was a great success, but it took every ounce of energy I had to get through it. I went through a bad flare for about three days of not being able to move and barely get myself out of bed. But after three days rest I started feeling much better. Luckily for me the weather has cooled off and there is very low humidity righ now, so that is helping me feel better.
That was all last weekend. About three days ago I woke up with a strange sensation on the left side of my head and face, painful with numbness and tingling. It started to spread down and across my face. I talked to the Acupunturist that is in our office, her concern is Bells Palsey, so she did a treatment and gave some herbs. She said even if it turns out not to be BP that it can’t hurt me. She said extreme stress can trigger BP at any time. I always thought it was just a viral thing that was random. But already after the first treatment I feel much better and the tingling has gone away.
I can’t get over one thing before another problem pops up. How in the world are we supposed to ever get better?
I almost feel like I have to defend my self from people calling me a hypochondriac because there is always something going wrong with me. I don’t want attention and certainly don’t want to have to see another doctor and pay for more medications. Its so frustrating but I am blessed because of where I work, with having the healthcare people around me that I have I see the medical doctors less than most, usually just for medications I need. I could be worse I know. But people are starting to jokingly call me that drama queen. But with a hint of sarcasm I am starting to resent it too.
Like I need another form of stress to add to my already long list of stress inducing situations.
I know we are all on the same side here and I thank GOD that I have such wonderful friends to relate too. But even then I feel that all I want to do is &itch all th time. And I will type a whole bunch then turn around and delete because it sounds like nothing but a gripe session to me.
Hugs and Spoons,
Brennie
Do you take Gabapentn? This causes those eye movements. I was told this by my doc. I noticed this when I had dosage changes. I hate that feeling.
Brennie…I know exactly what you are saying. I also have a family member who said about my husband and myself having to go to doctors so much that “if that was the life style we wanted”…it really burns me up! She also says she has fibromyalgia and does not complain about it like I do. I tried to explain that fibro is not the same disease as DD, even though I have both, but she is too stupid to understand that. I also feel that other family members do not grasp the full extent of my disability as they feel my husband does too much around the house and they expect me to still do everything I could do a few years ago. For example my daughter rented a vacation house for a trip we were taking with them where we had to climb flights of stairs to get to our room from the beach. I fell the first time I tried to get to the beach and cut my leg which is still sore over a year later as my diabetes won’t let wounds heal. We have to go around with people thinking we are weak or hypochondriacs when we have so much courage and fortitude to just make it through the day. We could just all take to our beds and stay there. If they only knew! Go ahead and read stuff from this site so they know how terrible and disabling this disease is. My heart goes out to you Brennie and I for one totally validate your suffering and admire your courage. Hugs and Support…Grandma Sylvia
I agree Pamela, it is great to know everything and sharing here is helpful to all – even if you don’t have a problem, the knowledge of it can be helpful if you do develop it later. I have those little seizure type things but always thought everyone did.
Hmmm… now I wonder about my eyeball seizures (LOL, that sounds funny but that is what it seems like!) My eyes will dart back and forth sometimes and I can’t do anything but wait for them to stop. Maybe that is not normal either. Maybe that is connected to DD too. I will have to search that.
This is so strange, I’ve noticed jerking at times too, normally when I’m laying down. This is something new and it doesn’t happen daily but I was about asleep last night when I did like this whole body jerk, very short duration and not painful, but strange.
Myoclonic seizures are another rare condition, but they don’t seem to be all that rare among DD sufferers. I am starting to get some jerking too. Everyone here needs to at least be aware this can happen just in case.
Hugs,
Pamela
RE: "And another thing I have recently been noticing that I my whole body jerks at various times and when that happens I feel like I am on the verge of a some kind of either whole body spasm, or siezure, which I have never had before so I am not sure, its like the body is gearing up to do something I will not be able to control."
This is something I experience also, so I looked up Myoclonic seizures... the info I found doesn't sound like me, but while I was looking I found a page that listed 2 categories with 5 different types of seizures. I hope it is OK to post a link... 'cause I am going to, LOL!
http://www.neurologychannel.com/seizures/types.shtml
I think I have a simpler version of the Simple Partial seizure :) Maybe it is normal (?)
Suri,
I don’t know what that eye thing is, but it is certainly not normal. It amazes me the things we have thought was normal all our lives. I thought everyone had painful fat until 4 or 5 years ago. Mine had always been, and it never occurred to me I was different.
Hugs,
pamela
Kathieh,
if that’s the only time it happens, it is a “sleep start” and that really does happen to everyone. It a falling sensation. If that becomes frequent or severe, or wakes you from a sound sleep, you may want to chexck with a doctor.
Hugs,
pamela
Optokinetic nystagmus is what I think they called it when my Mom had rapid eye movements from side to side. I don’t think it bothered her much. Also, you have rapid eye movements with the dreaming stage of sleep. Since we have sleep disturbances maybe it is related to that…Hugs, Grandma Sylvia
I do take gababentin (I have no idea why I keep taking it since it does nothing for me), but I had this eye thing for years. Maybe the gabapentin is making it happen more often.
Thanks for the info about Optokinetic nystagmus... yesterday after I posted about my eye seizures :) I did a search and epilepsy kept coming up! I had to log off the computer from the shock, LOL!!! One problem at a time please!!! Nice to know of another cause!!
Kathieh, I do that jerk thing too when almost asleep... I think it is normal. I just looked it up... found that Myoclonic jerks are a normal part of sleep.
http://www.faqkids.com/idx/6/186/The_Human_Body/article/Why_Does_My_Body_Jerk_Before_I_Fall_Asleep.html
It is interesting. Your body interrupts going to sleep with “Oh no she is dying” and jerks you awake. That is what the falling asleep jerk is…the other jerk we get with DD is different…we are not going to sleep…it feels like being stung by a bug so your body jerks…So I get the jerks with the stings! It is a sting-jerk!
: ) : ) : ) Grandma Sylvia
I here what all of you are saying it like i’m reading something i wrote. I too have the jerks or siezure like eposodes. i have already done a eppilepsy study of course. it was all in my head well he described it different. he said everyone else is getting stomack ulcers and i’m getting siesures i guess that was better than calling me crazy. but i jerk when i relax the jerk was worse at first now i wake up and sometimes I can’t more a muscle not even speak. now I’m seeing another doctow she says she thinks she know what in wrong with me but i have to have another sleep study. i do have a doctor that said he would be glad to evaluate me for dercums he is one of the doctors that edited the emedicine article. i can’t go til after my husband had sergery this month he is a dermatology. that reminds me do any of you have problems with you’re hand breaking out with little blisters and real red looking im going on my second round of this stuff. But if any of you live in texas the docor is in temple i’v e have to look up his name if you need it . joy