View Full Version : It's been a long time
05-14-2009, 05:16 AM
Wow, I just realized I haven't logged on to this site in over 2 years. I guess that's what happens when you start to feel better and the activities of life increase.
I've recently been struggling trying to get by everyday. Back in September last year I started with increased fatigue and some minor joint aches due to pushing myself a little too hard. In December I started to get this back pain in my shoulder blade area which I had a few years back during a huge flare. Since December it has increased and my whole upper back is so painful especially in the morning and at night. A few years ago they thought it was myofacial pain but I am starting to think I have fibromyalgia. Even the muscles in my upper arms are so painful it hurts sometimes to even lift them. This pain has continued for the last 4 1/2 months. My rheum last month did not feel that it was the lupus but muscle related. He started me on a low dose of lyrica because I have been dealing with throbbing pain. I will admit that it did help some because I was able to finally lay down flat with minimal pain.
After being laid off from my previous job I had to start over again in January. I started a new area of nursing and I am assisitng with surgeries. It started out great but they have been increasing the number of surgeries and it's taking a toll on my. I'm on my feet almost a full 8 hours. Also my feet have started to hurt on the bottoms. Not sure if this is related to the lyrica or not. I have developed ankle swelling from the lyrica too. I just don't know if I can continue in this job. I'm trying to find a new one but it's hard thanks to the economy.
Life is just miserable right now. My poor husband has to always hear me whine and I can hardly do any housework. It's ridiculous!!!! I feel so useless. I just cry some evenings because of the pain. And I can't get the adequate sleep because between 330 and 530 in the morning I wake up with the stiffest back and can not get comfortable. I just wish this would all go away!
Sorry for whining to you all but I didn't know where else to go that others would understand me.
05-14-2009, 05:40 AM
Oh so much to deal with and you are NOT whining at all.Wow,so much pain and discomfort.I wish Doctors would listen and help people in suffering so much more than they do.I hope you can call him,let him know all this what told us.You need more help and now.I understand how you must feel at home,but you are sick and its not your fault.I understood all what you wrote as i too feel similar pain.I hope very soon you get help from your Doctor who should be helping you more.I am thinking of you.So glad you came back.I have seen posts in the past from you.Many members you know will come and support you my friend.You are not alone and you know we all understand you.Just take one day at a time and take it slow.We are here for you.
love n support
05-14-2009, 06:07 AM
Thanks Angel I appreciate your response. It means a great deal to me.
05-14-2009, 06:13 AM
You are welcome just wish i could help you more.Think about calling the doc and telling him all this.Could make a massive difference to your life.Keep posting.xxxxxxxxxxxxxxxx
05-14-2009, 04:56 PM
So sorry you're suffering, ButterflyRN....sending a gentle HUG your way.... :hug:
I'm pretty sure in the rules of the forum it states that each member is entitled to as many vents and whines as they want. They haven't set a limit luckily....otherwise most of us would be way past it.
This must be especially hard for you, cuz you had those few years without any problems, when you were feeling good. So to be hit again with more symptoms and pain is just so frustrating.
The economy and employement situation right now has affected so many people, and I'm certain has caused plenty of people to be making some choices about whether to stay, or not stay, in a job that's not ideal for them. I wish it wasn't so. This has caused so many people such terrible stress, it's hard to watch the effects it's having everywhere. I'm really sorry the job that you thought would be what you want and would make you happy, has turned out to be difficult with your health situation at the moment. I'm not sure I have any suggestions or advice worth sharing...but I did have a thought about your very sore bottoms of your feet. Could you try some of those gel insoles for your work shoes to see if that might give a little relief for your eight hour standing situation? Maybe you're already doing this...but I'd thought I'd throw it out there.
Unfortunately, I haven't been on Lyrica so not sure about any side effects. I know there are several members who have, so I'm hoping they'll join this thread soon.
I just wanted to let you know I understand your sadness and frustration and I'm sorry you have to go through this. Just know that you can always come here and find someone to help you through the tough times...someone that understands and cares.
05-15-2009, 09:20 AM
First...WELCOME BACK!!! I, of course, remember you and I am so glad to see you back with us. I am sorry that you are suffering so much right now and I understand how conflicting your job situation is given the crisis in our economy and the loss of so many jobs by so many people. This, in and of itself, can cause a harmful amount of stress and I wish that there was something that I could do to help alleviate your stress:grumpy:
I'm sure that you remember that there is no such thing as whining here. We all understand what you are dealing with and we know how this disease can wreak havoc on our lives. So, please do not apologize, it is not necessary.
I, too, have Lupus and Fibromyalgia and I have to tell you that I suffer so much more from my Fibro than my Lupus. My muscles ache (oh my GOD how they ache) relentlessly, they burn (as if someone were using a blow-torch up and down my arms and legs). The stiffness..my doctor attributes this to my Lupus, the burning and aching are attributed to my Fibro. Whatever the underlying cause...the pain, stiffness, aches and burning are almost disabling!
I've heard good things about Lyrica and Fibromyalgia. Unfortunately, I belong to an HMO that does not prescribe Lyrica - so I am still taking anti-depressants for the pain. I understand that Lyrica takes a while to truly feel its effects, but once that happens, it has been reported to work well. I do hope that it works for you!
I truly understand your sadness and there is nothing wrong with you for feeling this way. However, you are not useless! You are very brave and very productive - still working at a stressful and demanding job while dealing with all of these adverse symptoms. It is quite natural for you to be completely depleted by the time that you get home from work. Look at the uphill battle that you've won just by going to work and making it through the day (fighting fatigue, pain, aches, depression, etc.). No, you are so very, very far from useless! You are, in fact, an inspiration and I admire your strength!
If you find that you are not able to continue in that job, please DO NOT consider yourself as having failed. That is so far from the truth! In an 8 hour day, you have done much more that I can do in a week! However, you may have to make some accommodations in order to manage your health with these illnesses! That is not a failure, it is a very brave thing to do. Please know that we are here for you and to help you in any way that we can! Give yourself credit for all that you do. We recognize your strength, it is time for you to recognize it also!
Peace and Blessings
05-15-2009, 07:55 PM
Thank you everyone very much for all of your kind words and support. It's so nice to come to a place where others understand me. My husband has felt especially over this last week that I have been very depressed. I don't know what would have given that away I only say "I don't want to live" due to the pain. I really don't mean it and would never hurt myself but the pain does get very frustrating. But I am having a better day.
I went today and had a massage. Today was one of my best days that I have had in a very very long time. I'm going to try and have a massage once a month. I think this will be good for me. I also tried sleeping/hugging a pillow last night and I think that helped me. I didn't wake up with a stiff back. Here's hoping to another good night and good day tomorrow!
Thanks again everyone. I'm glad I have all of you!
05-15-2009, 09:39 PM
sorry for the delay in responding, but i seel many others have joined in to support you.
I too have fibromyalgia and lupus. my fibro is (like saysusie) very painful especially in my arms, thighs, upper back, chest and shoulders. Has your rheumy tested you for fibro...it is a simple test done by applying pressure on the specific fibromyalgia pressure points.
I tried Lyrica several years ago, but had to quit because of side effects (now i don't remember what they were). Many members here have and/or are taking lyrica and get good results. so, keep taking it and hopefully you will be one of the people that it helps.
before my dr. diagnosed me with lupus, she gave me a medrol injection. This injection provided me with immediate relief, and she said that it was also used in the diagnostic process. Lupus responds to medrol, where other diseases do not.
i am glad you are back, but i am very sad that you are having troubles. Don't mark yourself as useless, you just may have to do things differently than you used to, but you can still do things....you are a valuable soul.
05-16-2009, 06:21 AM
Phyllis, thanks for your response. My rheum has tried a few of the trigger points in my back which have not produced any pain. But I am going to talk more about his with him at my next appointment in a couple of weeks. Thanks for the advice!
05-16-2009, 08:36 AM
good morning butterflyrn,
hope you are having a nice weekend.
there are many pressure points located in soft tissue at chest, knees, lower shoulder, hips, and especially in back of neck and head areas. There is a diagram of specific points at one of the fibrymyalgia web sites, and you can get specific location from there.
I don't know if just checking back was a thorough fibro exam.
05-17-2009, 12:36 PM
I have been doing my research of fibromyalgia and appreciate your help on the information about the trigger points. I am suppose to see my rheum in a couple of weeks but I think I will see about going sooner. There was a change in weather last night (cold front with rain moved in) and my body hurt all over I couldn't stand to move in bed. Today I'm a little better but my one knee is so painful and my fingers hurt. I have more bad days then good days anymore.
My husband keeps telling me to quit my job and look for something else. I hate being a quitter but it may be time to stop working. There are just so many goals we have in our life right now and not working will really put us behinde and I think that could cause stress in our house. My husband if very supportive but at the same time he is goal oriented so it will be hard for him if I'm not working. I just want to be like I was 7 years ago in remission and able to do so much. Now I push myself through a day of work and when I get home my body shuts down and I become so sore. I'm just so frustrated! My life is so pathetic anymore.
Sorry, I'm just becoming increasingly frustrated that my quality of life has declined so much. I'm only 30 and I never imagined I would be where I am at yet. I thought in about another 10 years or so before I would have issues. My goals for this time of my life are so out of reach.
05-18-2009, 02:34 PM
Hi Butterfly RN!!!! Sorry you dont feel well:no: Hey, i know massages help ALOT!!!! I also KNOW from my own experience with it that accupuncture HELPS EVEN BETTER!!! Please give it a try!!! You'll LOVE IT!!!! I just wish insurance companies would acknowledge it as a necessary treatment and cover it!:wacko: Its costly but even if you went once or twice a month you would get the benefits from it! Good Luck and i hope you feel better!!!:cute:
05-18-2009, 05:22 PM
loosing life as we knew it is one of the casualities of this disease. I think each of us has watched as our lives changed into something we had never been before. The sad reality is that we have to establish a new definition of "normal"
so sorry you are having a rough time. Thankgoodness your husband is caring and willing to change his lifestyle in order to help you. However, i can tell you that it is very difficult for an ambitious partner watch and understand when their mate appears to loose their ambitions. Hopefully, he will learn as much as he can about lupus, and will be able to accept the new you....you are still the woman he fell in love with and still loves, but it is often very hard for partners to sit by us and not be able to fix everything.
05-18-2009, 05:35 PM
You're sooo right Phyllis, especiallly since men are wired to WANT to FIX things. AHHHHH, the battle of the sexes in one way or another huh!:shocked:
05-18-2009, 08:04 PM
Thank you so much for your responses. The support all of you give means the world to me!