Yesterday was horrible or me…I took 6 Tramadol(not at one time) I took 2 at a time…The pain was horrible in my lower back and knees …I have started to wheeze when I get over exerted.This has never happened
before .Also my feet will not stay not swollen even after wrapping them and putting them up…Is this the DD and lipedema progressing or flaring ?? Has anyone else experienced this?? Could it be because it is getting
to be winter like here in TN??(temp dropped from the 60’s to the 40’s)Also have been experiencing am asking because I feel so alone going thru this and this group helps immensely…
Hi Elaine,
I wheeze too, especially with any exertion. If your feet are swelling, that isn’t the lipedema. It is more likely that the lipedema is progressing into lymphedema. With lipedema, the swelling in in the legs and stops at the ankles. Do you belong to a lipedema group? If you will send me your email addy privately, I’ll send you a link to a good one where you can learn an awful lot about it.
Hugs,
pamela
Elaine…You are certainly not alone. We are right here suffering right along with you. It was bitter cold today and I had to go out. My hips freeze up so bad in the cold. Are you keeping your feet higher than your heart? You have to use pillows. How unrealistic the doctors are who tell you this. I was also told to keep my feet up this week. What are the side effects of your pills? Could they make you short of breath? I hope all of our families understand that we won’t be doing all the work and waiting on them this week. Just say NO! I wish you could find a good PCP. I love mine. She is a woman DO. We care about you. Stay warm. Hugs, Grandma Sylvia
Thanks…Today was bad…My back hurt more than ever just doing little things…and all the way down from lower back to behind the knee on my right side…I am afraid to take another pain pill last one knocked me out…I have a suggestion for all sufferers…I got a flash drive and am putting everything and anything else pertaining to me and info on DD on it in case anything should happen to me…This is a great thing especially for pwoplw who might not have anyone that knows about your meds or DD
Sorry you are having such horrible pain. I am on tramadol but it does nothing for me. I keep taking it though and also darvacet.
I have pain but not the same as you are having. I wish I could be helpful!!!
I hope you get some relief 
GREAT IDEA about info on a disc. I have a list of my medications on a post it note and have a file on my PC with my whole ordeal and everything I have gone through. I started that file before I knew I had DD — I had no idea what was wrong with me and I titled the file “IF I DIE THIS IS THE REASON” LOL!!! I seriously thought I might die and wanted my symptoms known for the coroner to do an autopsy. That sounds so morbid, but I really did have some moments before I knew about DD when I thought they would never figure out what was wrong with me until they did an autopsy.
SuRi…you are so dear that you started that journal to leave an explanation behind. I feel the same way…that I need to make my best effort to help others with DD as I may not be around long…I of course have other serious medical problems…diabetes, neuropathy, venous stasis and heart problems. Before you are diagnosed is when the fear is the worst. You know you are very ill but don’t know why. I think we all felt we were maybe nuts before we had the DD explanation. That is why this site is so important. When I found it after I was finally diagnosed correctly after 40 years of progressive suffering I wept to finally know what I had! Good luck Elaine with your surgery. Suri…everyone on your web sites must love you like we do and I see why you have so much email. I only do 3 sites and I spend time every day to try and keep up. I am so sorry your experience was so bad with your surgery. We all learn from others what to watch out for. Thanks for sharing with us! Hugs to All, Grandma Sylvia
Elaine,
I am so sorry that you are in so much pain. I know how you feel about this site, I too have only this site and one other that I post on. The friends I have in both keep me going when nothing else can. Its that we understand each other pain unlike anyone else can.
I have been in a bad flare on in my left arm, making it very difficult to type, because I can only use one hand. The fingers in my left hand have been numb, the pain running from my shoulder all the way to the tips of my fingers. It is one of the worst flares I have ever had, certainly the longest.
My boss has let me go at work. I asked her too. I cannot do my job anymore. No matter how I try everytime I get over one thing something else comes up. The only way I can survive this is to quit working and take care of myself. I have have children and others who need me to be alive. There is now way I would survive another year of the pace I have been on. It actually was a relief to my boss. She and I have worked together for more than sixteen years. She was watching me get worse and had no clue how to help me. She never complained when I showed up late to work. Or couldn’t remember certain things. But I knew in my heart I was slipping and it wasn’t fair to either of us for me to keep trying. It was one of the hardest things I have ever done. But I feel relieved. I will be working part time for the next couple of weeks or so to help her out. I will have to help train someone to help her.
Hugs to you sweetie and we are here for you.
Love Brennie
Brennie
I truly think you are a wonder…How could anyone feeling like we do keep on working…I found out this week jut how much the cold hurts us…I didn’t fel like this ast year but I (sadly) know now that this gets worse …Im sorry for not believing those who posted that it does get worse…IT does and will…I went out side to feed my kitties
and dog and was only outside a little but I had such severe pain esp in my lower back and arms and knees.
OMG! It was horrible b ut when I came inside and warmed up it was a bit better…It took a while for it to subside to bearable level…I am considering getting some of those hot patches to put on my back for really cold weather…
Elaine,
Yes, you are right, it does keep getting worse! I am still working both my jobs, but I don’t think I can much longer. My arms and legs are aching something awful today. I was driving the bus along this morning and got a stinging sensation in the middle digit of my right ring finger. I looked when I had a stop, and a new lump had popped up there just that quickly! They are coming in so fast and growing so big now I know I will have to give up my job soon, at least the driving one. It’s very scary, though. I’m single and I don’t know how I’ll get by until I get my disability.
Hugs and spoons,
Pamela
Pamela,
I know how scarey the thought of not working is, I don’t know how things will work out but I believe God will see us through it. We just have to keep the faith sweetie. This too shall pass…
Love you,
Brennie
You are right, Brennie. God has always gotten me through and He will again. Thanks for the reminder.
Love you too,
Pamela
Dear Girls…Your life is about more than money. Take my advice on how to get SS disability. Learn from my mistakes. I worked well past the time I should have and my health has really suffered. Sitting at that work station 10 hours a day with little in the way of breaks and mandatory overtime of two hours a day most of the time for 23 years made my feet and legs so much worse. I KNOW my feet and legs and DD and diabetes would not be so bad if I had stopped sooner. I might not have a new house, furniture or car but so what! We will probably loose a lot soon due to my RX costs anyway. In the end it all goes to the nursing home! I should have quit at age 50 and enjoyed life a little before I got so bad. I hope none of you progress to my state or if you are already there, bless you and may you find some comfort. Hugs, Grandma Sylvia
Grandma I am already near to your stage…I was crying tonite because this is a season we joy be thankful and I am thankful for what blessings I have but my bro died in May and I cant help thinking about him…And on top of that I feel like poop and look like poop…I have two scars from having c sections and although they were using a bikini cut when I had the c sections my Dr opted to give me a horrible scar…Not just once but twice mind you…And today I found the scars to have a ton of little bity lumps growing right along side and it felt like I just had my c sections all over…I looked at myself in the mirror and I hated what I saw…I am so tired of not being able to do what I used to do…
Dear Elaine…I hate to hear you so depressed. Do you have any amitriptyline or other anti-depressant? I wish you had someone to talk to. In our phone book we have under social services a list of resources who might be able to help you. I am so very sorry that you lost your brother. I have thought about how terrible that was for you every since you told us about it. I think maybe you are finally getting around really grieving for him. The holidays are the hardest when you have lost someone. I know very well. I had to distance myself from five of my sisters… so in essence I lost them when my Mother died. I think of you every day and your many challenges. You must not despair…remember…this too shall pass…that gets me through many hard days. We all feel that we should be joyful and enjoying the bosom of our families…but know that all families have problems and unhappiness. You are having more than your share but a time will come when good times return. The holidays always bring out depression if you have bad memories of the past. I hope that your husband has found work and is treating you well. You deserve to be happy! I wish that I could find the words to comfort you. Remember the love that you shared with your brother and remember happier days. He is no longer sick or suffering. Please accept the love and support of your friends here on careplace. Thanksgiving was always my favorite holiday until an incident five years ago. My pride was my beautiful china and crystal and perfect table and meal. An uncalled for incident ruined my perfect day and now I do not cook or use my beautiful china at my house anymore. That is actually better as it is too much work for me now…so sometimes things happen that seem horrible but later the end result works out better. I think my John was tired of getting up at 5:30 to help me get the stuffing made and the turkey in the oven…as we had done it for 37 years straight! Now, we just go to my daughters and I don’t have to do anything. One idea is try to create some happiness. Get a few flowers for yourself. Don’t expect so much from yourself. You don’t have to be happy this holiday season. You suffered a terrible loss and will need time to recover. Try and be good to yourself…I wish you could come over for a cup of tea. I would make you cookies! Hugs, Grandma Sylvia
I appreciate every word…It made me smile…You know I never believed in omens but I think that when someone dies and goes to heaven they must send something as a sign they are okay…I think back to my brothers
funeral and how a dragonfly kept flying around us and it landed on my shoulder and stayed for awhile then it flew off and kept flying around us for the longest time until it flew off…
Maybe that is romantising somewhat but I have been thinking it was a sign from my brother that he is OK and I find that thought a comfort. Thank you so much Grandma…Some good news is my new Dr called today and now I have an official documented diagnosis as lymphedema…He hasn’t said lipedema yet but Dr Hebst said that she though I had both…It will take me some talking to him and some research by me for him but he has been just as good to me as the last Dr was…
By the way I have done some “experimenting” on my own as well and stopped taking the Doxycycline
for the last month and I have had a serious amount of growths occur and more pain…Needless to say I am back on the Doxycycline…And I do take amitriptiline but at night I tried in the AM to help me with
depression…It knocked me clean out and I didn’t get any sleep that night for sleeping all day…Again, you are a blessing to me and all here on Careplace Grandma…don’t you ever go away…And that goes for
all the other “sisters and brothers” here on Careplace…
Thank you all for well wishes and support…Back at ya…sorry so long but now I gotta go …I am having lumps taken out of my thigh in Dec so I can actually sit down without anymore pain…
Elaine,
I truly believe your brother did send that dragonfly! I lost a close friend a couple of years ago and started seeing ladybugs everywhere after her death. Sometimes, one will cling to my windshield all during my routes! This is significant because Jo and I had talked a lot about ladybugs. (She had thought they were called Aphids, and I had told her, no, they ATE aphids.) anyway, I do believe our loved ones send us signs they are okay.
Hugs and spoons,
Pamela
Hi Sylvia,
I appreciate the advice and will use it when I am forced to quit working. My situation is different form most. Since I am single and alone, it isn’t a matter of tightening my belt. I already have tightened it as far as it will go, even working both jobs! I could actually end up with no home and not even a car to sleep in. Anyone who can quit, certainly should. I have to stick it out for a while and make plans for my survival when I just can’t anymore. I really don’t have a choice.
Hugs and spoons,
Pamela
Pamela
I will keep you in my prayers…Sometimes I cant remember everyone and everything I need to pray for but all I tell God is - I know You understand just please keep all the people I know need You and I lift them up to You …
Thanks Elaine,
I do the same thing. I have so many in my prayer list, I’m afraid I would miss someone. I do try to pray for specific people who are having hard times as I go through my day, though. God has been blessing me an awful lot lately, so I know it will all work out somehow. I have to do my part though.
Hugs and spoons,
Pamela