Hi everybody…I feel like I am dying. The pain is so intense in my lower back. It feels like it comes from the lower lumbar discs which mine are bulging they say…and goes to the hips and down the legs. Of course my feet are swollen all the time. I went back on the Gabapentin (Neurontin) as I can not stand this much pain. I just feel like I am very sick in general. My brain is so fuzzy. All 3,000 lumps are killing me from my neck to my feet. I have never felt so bad. Maybe the Gabapentin will take time to build back up in my system. I quit taking them for about a week to see if the swelling would go down in my ankles and feet. It went down some but I can not stand not taking any pain pills. I have not been using the wheelchair in the house and trying to walk but it hurts so bad. I know it is the weather change probably. I am going to a new pain doctor next week. The last one about killed me with the cortizone injections that gave me gout. I don’t think they can help me. The TENS unit is the only thing that helps at all. I will ask him who could take out some of my “back mice”…I have to sit in my chair and lean my upper body way-way over to the side keeping my feet on the floor…to stretch that area and that feels good for a minute. Try it (those with back mice) and tell me if it helps you. Weak Hugs…Grandma Sylvia
Oh Grandma…That does not help me…It is extremely painful for me to do that…Walking was horrible yesterday…I am feeling like I am so heavy. Moving legs is the worst because they feel like they are made of lead… I am doing better but its horrible now when I went into the store yesterday to get a few things I was sweating profusely and people were looking at me lie I was nuts…I couldn’t get cooled off…I was soaking wet by the time we got home…Then later when my husband and I went to our barn to feed I was sweating while he wore a jacket because it was so cool out…The only time I dont sweat is when I dont do a thing…I cant live like that…I gotta do something … I am having extreme tooth ache today so bad its up into my eye. I finally found a dentist that would see me and I am having the bad tooth pulled…In fact I am never having another root canal ever…Just pull the darn thing is my motto now…
I am also battling a sinus infection and a cold…I got to thinking about my brother and sisters complaints when we were kids and I was the one who was always sick…I caught everything…I wonder how many others had that experience as a kid? I do not have any recollection of my siblings ever getting sick like I did…I also had my tonsils out twice and had a terrible case of hives after being stung by a wasp and I also had mumps,chicken pox and measles…I had many sinus infections and got the flu more times then I care to remember…I am amazed I lived thru childhood…anyhow, I hope that some one finds how to get rid of this crap so I can go back to being me again…
HI Sylvia, I’m so sorry to hear you are feeling so bad! Worse than the gout attack? Yowsa!
I do hope the new pain doc can help. There must be something they can do!
Hugs and spoons,
Pamela
Oh, me too! I have 4 get well cards from my first grade teacher in a scrap book. She only sent cards if you’d been gone for two weeks! I had a brother and a sister. I was the one who caught everything and, even when we all got it, I was the sickest. I also had terrible reactions to bee and wasp stings, and a hornet nearly killed me. I think that kind of medical history is common among those of us with DD.
Pamela
Thanks everyone. Nothing is worse than the gout! But at least it went away (for now). This DD never goes away and just keeps getting worse. It won’t relent until I am bed ridden. I saw all the children this weekend which always makes me happy. This is such a beautiful time of year. Our mums and coleus are beautiful. The most beautiful time of year coinsides with a worsening of DD symptoms which is a real shame. It is cooler so I don’t sweat as much. I hope you all have a beautiful fall. Our daughter cooked fish and squash over an open fire last night and we enjoyed the bonfire. I had to have help to make it to her backyard. I won’t be doing that much longer. I hope you are all able to enjoy the fall. Hugs, Grandma Sylvia
Hello Grandma Sylvia! I hate that you aren’t feeling well. I understand what you mean about the back mice. I am so sore this morning. I have been thankfully using my tens unit as well most of the weekend. I just got one from a friend of mine that found it at the flea market for 10 bucks. I have been running a fever and aching. I feel like I have the flu almost without the vohmetting. Thank you for recommending the tens unit!!! I had one before and had lost it somewhere in a move. Probably in the storage shed that I can’t find anything in. I am waiting still on my EKG results, hopefully I will know something later today if I can start the mexitil. I am desprite for relief.
Grandma- I tried bending like you said but I cant without severe pain…I have two rather large hard lumps on my right side too as well as the back thing…The two lumps are right where my kidneys are bet the Dr said it wasn’t
affecting my kidneys, And I am pushing myself to keep doing things…I take more than what the Dr has told me to take .I am taking Gabapentin(Neurontin) 4 times a day with Tramadol in between doses and Amitriptilyn at night to help me sleep…Fortunately I have not had to up that yet for sleeplessness…
But I do have to take it early in the night for me to sleep sound and wake up early enough to watch my grandson…I also have a lot more problems with my fat dead feeling legs and my knees and hips are starting to give out more…Tonite is a bad night for me…I am facing the decision to have my horse who is 28 yrs old
put to sleep…Her arthritis is bad where she now drags her back feet when she walks…I have had her a long long time…I know it has to be done but it is making me hurt inside as well as outside…
EJohnson…Pam…and Christine…Thanks for your comments. I have a question for you. Try bending from the waist to the side as far as you can and hold it a few seconds. Does that hurt you a lot? It hurts but it seems to stretch the muscles in the mice pain area. I am trying to determine if most of my pain in my lower back is from DD or the arthritis and bulging disc in my back before I see the new pain doctor. The hip pain I know is DD. Christine…they have new TENS unit out that are better and you can order them on the net without an RX.They don’t cost as much as they used to. I am so glad it is helping you. You deserve to find some help as you are working so hard to get better. It is nice to have something that you can turn to for just a little relief. The RX pain patches one doctor gave me do not do anything. Any suggestions as to what I should say to him? I am going to type up a list tonight. I did that before and took it to the rheumatologist and he tried to answer all the points I made. I know they want me to go to PT but I have not felt up to it. EJohnson…I always read your posts with great interest and sympathy. I know how much you are suffering and it does not sound like you are getting much support. You could read some of our posting to those around you so that they see how well you are doing to do what you do. A lot of us are not able to do all the things you still do. You are brave to carry on. I am pretty much an invalid and my husband has to wait on me hand and foot. Pam…dear…let me know about the bending to the left thing. Your body is so much like mine I am curious if you can feet that stretch. Hey Girls…Good thing we don’t have any money to loose with what is going on! We don’t need anymore stress. Hugs to All My Sweet Friends…Grandma Sylvia
Hi Sylvia,
I did as you asked and, no, bending to the sides is not very painful for me, although I can’t bend very far at all. I do feel the stretch though. Neither is bending forward from the waist. I have a nasty spinal condition that is actually relieved by bending forward, but I can’t bend back or even stand up straight. That is impossible for me and causes great pain to even try.
As for not having any money to lose, that’s true but I do have a second job in the loan closing business and I have all but lost that. (ie, I still have the job-there’s just no work!)
Hugs,
Pamela
Thanks Pam…that helps me know what to say to the new pain doctor. I always assume all my pain is DD but maybe this is something else. Hugs, Sylvia
Ejohnson, I am sorry to hear about the horse. It is so hard to lose an animal you have had so long. My heart goes out to you. Not like you need anymore stress either.
Grandma sylvia, I only have that pain when I stand or sit long periods of time. It is a sharp throb then.
I am sorry making it so short. I still am not feeling well.
Hope everyone is feeling better.
hugs,
Christine
EJohnson…you poor thing. I know how hard that must be on you to loose your horse. He would probably just be glad to be free from pain and just sleeping. I know my daughter did not want to put her dogs down when they were so old and ill and we do miss them and talk about how cute and smart they were, but it was an act of kindness to free them from their sick bodies. I am so sorry that you are also feeling so ill. Pain makes it so hard to make decisions or even think at all about anything else. I have made decisions that were poor just to be done with it I wish we could all live forever…our pets too! I think their comes a point when the pain of life becomes too much. But I will hang on as long as I can because of the great joy I get from my grandchildren. That is so nice that you babysit. I treasure the time I get to spend with the little ones. Their joy in life is contagious! I hope that you get some relief soon and kiss the little one for me. Many Hugs, Grandma Sylvia
Thank you Grandma…The baby will be here tomorrow…He is so cute sometimes…But he is 2 and the old saying terrible two’s is what he is going thru right now…
I wish it didn’t affect me but it does and sometimes I have to just rest and cant because he gets into everything…I had thought about just saying no to baby sitting but I would miss him…So whats a person to do…I have to just sit back and relax and definitely while he is napping…Hope you feel better soon too …
EJohnson,
I’m so sorry about your horse! My heart goes out to you, both for the impending loss of your horse and for all the pain you are suffering. I wish there was something I could do to help. Be careful with taking more meds than prescribed. Not only is that dangerous, but you may run out before you can get refills again, and then you will really be in a fix!
Hugs,
Pamela
My rheumatologist put me on Cymbalta and Trazodore to help me get to sleep with the CPAP. FYI Wish me luck! Hugs, Grandma Sylvia
Good luck!! I am praying you are able to get some sleep!
Hugs and spoons,
Pamela
Thanks so much Pam…you are always so supportive. Your friendship means so much to me. I am also wishing you well and I know how bad you feel right now. You are a brave woman! Hugs, Grandma Sylvia
Grandma Sylvia, my heart goes out to you and everyone here dealing with pain and loss. If I have DD (not diagnosed yet but pretty sure it is my problem), I am in the beginning stages. This morning was the first time I woke up feeling like my back had a metal pole in it (unable to move without pain for about an hour). Yesterday was a record for me with 5 new painful lipomas popping up. Mine sting and burn but it isn’t constant. (but not a day has gone by without pain since August).
I take 600mg 2x a day of gabapentin. It does nothing but I keep on taking it. (been on it since August so I am guessing it is in my system by now) Does anyone know the maximum dose a person can take without killing themselves? I would call my doc but he is an idiot and I am never speaking to him again (last visit he told me my pain was probably in my mind so he is history).
Suri…you are right he is an idiot. The next doctor you go to take some of the articles you can find on the web that explain the disease. I also take copies of the info on Dr. Karen Herbst’s web site so they can contact her if they do not know about DD. Do not be afraid. I am 62 and have had DD for 40 years and I am not dead yet! Our fellow Careplace member Arieldiva just wrote from Sweden that she knows of women in their 80s with DD in Sweden so I am somewhat comforted. No square inch of my skin is without some lumps now but it has taken 40 years to get this bad. You can’t really see most of them as they are hidden by the fat except for the really big ones so it is not a disfiguring disease. You may have a mild case and never get this bad. If you can still count your lumps you are just in the early stage! Dr. Herbst and this web site can be a real help to you. I am sorry that you have this awful thing but it could always be something worse. Hugs, Grandma Sylvia
Suri I forgot to answer your question about Gabapentin. I take up to six 600mg a day…I was taking 8…