Is it just me or does anyone feel sharp pains like a needle in cold and damp weather?? I went out last night and was sitting in the car and all of a sudden it felt ike someone poked me with a needle in the shoulder…But thats not the only time I have felt that so Im wondering if that pain was due to the DD??
Any drop in the Barometer and I feel it…like I can almost forecast the weather from the pain! And the full moon too! OUCH! I dread winter!
Judy
Yes I have these, but not just when it’s cold. I also am awakened by muscle jerks that scare the heck out of me and wake me from sleep. My heart about jumps out of my body and really beats fast and takes awhile to undue the startle reflex to settle down enough to get back to sleep. I think it maybe the tumors swelling, moving,or growing and hitting nerves or something… who knows just some more neat stuff to go with having DD, I guess? That is what just woke me up awhile ago and I am online at 5:30 checking email!
Davana
I hear you…I cant sleep at night so I am up late…pain wakes me in the morning…I have yet to find any peace when I rest…
That’s what kind of pains I get when I have new lipomas growing
Davana:
What you are describing is similar to RLS/PLMD (Periodic Limb Movement Disorder) or night myoclonus. I have both daytime Generalized Stimulus-sensitive Myoclonus and RLS/PLMD (my sleep study showed 105 limb movements per hour) which along with DD pain makes resting nearly impossible. You may want to talk to your doctor about getting a sleep study done. My medication for RLS has helped, although I have horrible insomnia due to DD pain and inability to get comfortable. I haven’t slept in the same bed with my husband in almost a year (I sleep in our office chair, on the couch or in recliner depending on where I’m hurting and even if I can sleep).
About the only time I do sleep well is when that big wall of fatigue hits me and slams me down for days sometimes and then they can’t wake me up. Although my Generalized Myoclonus started more than a year prior to the nodules/tumors showing up, some of my doctors have stated that they believe the tumors were there, non-painful and so small that they couldn’t be felt and that they were already on nerve endings which could have caused the myoclonus to begin with. Who knows but it might be worth checking out if it stops you from jerking awake when you can sleep. I take Mirapex 1 mg 2x/day (now). Mirapex is just now starting to be advertised for RLS but I’ve been on it for 3 or 4 yrs now - it is for Parkinson’s DZ but they found out that it worked for RLS/PLMD.
A friend of mine’s husband who is 63 just started taking it for his sudden-onset RLS and once they got his dosage up to my level, he’s been golden and sleeping great.
These little creatures sure can mess up your whole system/body, can’t they?
Best of luck
Benita
Hi Benita,
Thanks for the info, It is greatly appreciated. There are so many weird things happening to my body and I have no ideas on why and no help from Drs. They see you 10 min and ask how your doing and you tell them not so good and then they say well keep doing what you’ve been doing and well see you again in 3 mos… Thanks for $150.00.
I am so alone with this DD stuff. I don’t sleep with my husband either. I am in my bed in my room most of the time and last night I was sooo tired but couldn’t sleep because I was sweating and freezing at the same time. My arms and legs were burning up and aching like crazy then I became exhausted all over and slept most of today soaking wet and huddled up. I can’t plan on being able to do or go anywhere now. I never know if I will feel well enough to move.
I am hoping I am going to be able to make the trip to San Diego in Dec to see Dr Herbst. I got the tickets and hotel rm a few days ago that was a hassle and exhausted me doing just that. I will just have to drag myself there and do the best I can though. Do you take vitamins or any supplements for energy etc. I can’t eat because of tumors in stomach I feel full and if I eat I am miserable I drink ensure once in awhile and juices. I am a mess now as I am losing a lot of weight too 125 lbs from 145. I am not one of the usual obese cases in DD. My daughter is though and she is close to 300 lbs.
Well, Thanks again and good luck to you on your journey with this dreaded disease.
Hugs,
Davana
Most of us call those sharp needle pains “bee stings”. They occur when new lumps are forming. I also experience the feeling I am being poked with an ice pick, especially in cold damp weather. I get than a lot in my calves. Ouch!
Pamela
my sister for years was mis diagnosed with rhumatoid arthritis until 3 weeks ago she was diagnosed with fibromyalgia. my dr believes i have DD i am under investigation, my sister and I both have the same symptoms. I printed off info for me on DD and info for my sis. On reading the info on DD the first line says ‘dd can be misdiagnosed as fibromyalgia’. we both suffer pains like ‘bee stings’ especially in cold weather.
sorry, as i have no one at home who really understands i thought i would just share that with you.
Me too! Stinging pain…I think something bit me!I jerk too. How can we all have so many symptoms just the same? It amazes me. I really suffer in the cold damp weather we are having. Flooding is bad in Ohio and I wonder about our Careplace friends in other states hard hit by the flooding. Our blizzard has melted and the water has no place to go. Sleep? Who can sleep? When I get exhausted enough after a few days, and I dope myself up enough, I sleep until the pain in my hips and back wakes me up. My husband has to get up and sleep in his chair due to his shoulder that never healed right after he tore all his rotator cuff tendons off. So we walk around the house all night from bed to chair like ships in the night. I am up all night frequently with my IBS also. It used to be such a joy to sink down into my soft bed. Now, I have to put on pain roll on, take 6 or 7 pills and adjust 5 pillows. After an hour or so of laying there, I get back up for a drink, read awhile then try again. Sometimes, I just stay in the living room until it gets light so my husband can get some sleep before he has to get up and sleep in the chair. Anyway, those shocks are awful! The wet cold weather makes me much worse. : )
hahahahaha sorry didnt mean to laugh, but your house sounds like mine, my husband has sleep apneia and uses c-pap. if its not me moaning when turning over its his snoring thro gust of breeze flowing from his dropped jaw while he sleeps, oh i wish for a spare bedroom…
The sharp stinging pain is what alerted me to the DD, I had no idea what was going on. I had a line of blue bumps appearing down my arms and I would feel the sharp stinging pain first and then one of those would appear.
It was years before I could find anyone to pay attention to me. The doctors I went to just couldn’t give me any kind of answer. The hemotologist after all his extensive testing said they were “just” lipomas nother to worry about. Well thanks for nothing buddy! is what I felt like telling him after all that I had gone through. Its was a couple of years later that I saw a dermatologist that I found the answers I needed. And it took him all of ten minutes to figure it out what is was but then what I needed to do next was a mystery.
I remember being in shock that I finally had an answer although it made hundreds of new question appear. I am still amazed that there is so little known about this disease and so little interest from the medical community.
I am thankful I have a wonderful doctor that helps me get through my days with medications. But I would rather have a cure so none of us has to suffer with the pain any more.
You know, I must really be dense, because I had those stings for years and really thought something was biting me! Even after being diagnosed with DD, a friend mentioned the “bee stings” and it still didn’t register until I was “bitten” again. If not for the lumps on the soles of my feet, I might never have been diagnosed. I never complained to my doctor about the lumps before that. I was aware of several, but was completely oblivious to hundreds of others, and attributed all my pain to Fibromyalgia. Like Sylvia, I have had DD for at least 40 years. Go figure…
Pamela
Sylvia,
I am in Missouri and much of the state is suffering severe flooding. I’m in the Kansas City area and we are still above water here, Thank God.
Like your husband, I tore my left rotator cuff badly in a car accident caused by someone else. I had surgery for it in 2001, but have been unable to lay flat or sleep on either side ever since. I have an adjustable memory foam bed now. What a blessing! I highly recommend that type of bed for DD sufferers. I also have terrible IBS but it is, thankfully, usually at its worst in the mornings.
I agree the shocks are awful. I think this is neuropothy. I have a combination of numbness, stabbing pain, and electrical shocks.
Are we having fun yet?
Pamela
Hi Geordielass,
My sister apparently has DD too, but not as advanced as mine. She is already on disability from spinal stenosis, severe osteoarthritis of the neck, spine, hands and various other places, fibromyalgia, and a myriad of other health problems.
Please don’t apologize. We are here to listen and support each other!
Pamela