View Full Version : May I whine a little?
12-01-2008, 10:32 AM
I know that I don't post much, but I do follow you guys to see how you all are doing. I just need a little whine and I know that you guys will understand. I just can't tell my husband becuase he worries too much.
For the past 2 months, I have been in pain. Everyday. Some days are worse then others, but it is always there. It is so weird becuase I remember telling my husband how good I felt the first week of October. Then, I got busy and life got stressful, and it hit me and hasn't gone away. Most days I can manage it. I take a lot of Motrin per the rheumie, but other days I am pretty sad about it. Those are the days that it sits in my hands. I play piano and it is my outlet, so when I can't play I get sad.
I just think that it would be nice to wake up in the morning and think "Oh, I feel good today."I am sure that you have all thought that before too.
Anyway, I don't have any kind of diagnosis or anything. I see the dr in a couple of weeks. I can talk to him about it then. I just needed to whine about it a little. I will move on and deal with it. There are people dealing with a lot worse than me.
I don't like to talk about these kinds of things usually. I don't want people to know that I am hurting. I took a large volunteer posistion not realizing how much work it would be and some days it is kind of hard to focus and do a good job. I am not a quitter, but I didn't think that it would be this hard. I am not that sick. My calendar is quite full and I need to learn how to say no to things even though I don't want to. I am playing the piano this weekend at the mall and I am praying that my hands will not bother me. How do you deal with restricting your loves? I think this is what I am struggling with the most.
Anyway, that was a lot of whining. I appreciate that there is a place to put this. Thank you.
12-01-2008, 11:26 AM
I am sorry that you are in so much pain. It is perfectly good to complain at times as this illness is so darned stressful and man stress is the worst thing for you. You said that you are not diagnosed yet. Are they running tests on you to see if you have Lupus. It sounds like you may very well have it by the pain in your hands. I think that it is sad that you are having a hard time playing the piano. I am wondering if you are on Plaquenil or has the doctor suggested anything like this. You could also ask about a perscription NSAID (non-steroidal anti-inflammatory Drug) for the pain and inflammation in your hands. I sure hope that you can get some help from your doctor, because nobody should have to be in pain all the time. I send you cyberhugs and I will have you in my prayers that you will get past this and feel so much better.
12-01-2008, 12:11 PM
Hi busymom, sorry for the pain. I understand the constant daily pain. I lost count how long now for me, months at least. I have FMS and my hands and feet are the worse. I have to keep them moving to keep the pain down. I also use muscle rub a lot, specially at night. I put some on my hands and feet, then put on the cosmetic gloves and booties. They trap in that heat and ice feel, helps a lot. Flex and exercise your hands in warm water is what doc told me. I run a home day care and am always using hands and fingers to grip and flex. The more you baby your joints, the more it sets in. Don't over do it of course, just keep working them at a tolerrable level. May it help you out. I do hope you can play this weekend , said a prayer for you to. I love piano music, just beautiful. God bless and good luck sweety :D .
P.S. Whine all you want, it releaves so much. I used to keep it bottled up, do not like others knowing I'm in pain. Now I let it out and vent or whine, so helpful and everyone here's just great.
12-01-2008, 12:26 PM
Thank you for the prayers. That is so thoughtful of you guys.
I did have an ANA run back in the spring when my regular doctor was suspicious of Lupus. It was positive( 1:640), so she sent me to a Rheumatologist. He retested the ANA and it was negative and my sed rate was fine. So, I go visit him every couple of months and he tells me to take Motrin for the pain. I have told him about my hands and how while I play the piano my knuckles turn red and become very painful. He said that he doesn't know why they would do that. So, I don't know what to think. I see him every two months. I don't really care for him much, but he is the only one semi close to me that takes my insurance. (Tricare, woo hoo! :)) Sometimes I think that I am a quick 80 bucks for him. :lol:
Thanks for the hugs. It means a lot.
12-01-2008, 12:45 PM
Systemic lupus erythematosus is an autoimmune disease that causes a symmetric inflammatory arthritis that leads to fusifrom swelling of the fingers. Ask your doctor to run tests that will indicate if the problems with your hands are a result of inflammatory arthritis caused by Lupus.
Treatment is primarily designed to relieve pain and to restore function. Treatment decisions should be based on the type of arthritis that you have and your doctor has not yet determined that. Also, treatment decisions should also take into account the progression of your arthritis and its impact on your life (such as playing the piano).
Anti-inflammatory medications such as aspirin or ibuprofen may help to reduce swelling and relieve some of the pain. However, you may also need prescription medications or steroid (cortisone) injections in order to give you relief. You might also insist that your rheumy refer you to a physical or occupational therapist, because changing the way that you do things with your hands may help relieve pain and pressure and allow you to continue to play the piano.
You are at the point where you must become pro-active with your doctor. Since he is just making cursory checks and getting his insurance money, you will need to be the one who tells him what you want him to do in order to ensure that you are getting proper treatment and effective medication. Ibuprofen alone is not resolving your issues, therefore, you may need to insist that your doctor run tests and prescribe appropriate medication.
I wish you the best of luck! Keep us advised.
Peace and Blessings
12-02-2008, 09:17 AM
You really need to learn to say "No". Fortunately, I was good at saying "No" and really don't have a problem with it. The less I have on my calendar to do, the better I usually feel because I have some time to de-stress. Today, unfortunately, is a stressful day because I have an appt. at a government agency, and I am going to look at a house to rent in another town. It is also stressful when I have Dr. or Dentist appts., and as we all know work is stressful, but unavoidable. Granted some jobs are less stressful than others.
12-08-2008, 10:36 PM
I just wanted to come and let you know that all went well this past weekend at the mall. I had fun. My hands didn't bother me much. I am actually feeling pretty well tonight. I am thankful for that and I am not taking it for granted. Thanks for all your advice. It probably is time for me to get proactive with my doctor. It is not really my nature. My youngest son has some minor medical issues and I can do it for him, but it is harder when I do it for myself. It must just be the mama bear coming out. :D Anyway, just wanted to let you know that I am feeling a little better and thank you again for letting my whine a little.
12-08-2008, 11:43 PM
I am so happy you are feeling better! I am so glad you were able to get out there and do the one thing that helps release some stress. That is very important! I know it is frustrating, I do not remember what it is like to not feel some sort of pain but most days it is under control. I understand about not wanting to always tell your husband because he worries. I struggle with that at times and hold it in. I am learning that actually makes me feel worse :( So, along with learning to say no, I have been trying to communicate with everyone around me a little bit better. You can always whine to us! I am new and I find this site one of the biggest comforts in my everyday life! I feel a little less lonely when I start feeling yucky! I am happy you are feeling better and keep your chin up :D
12-10-2008, 10:34 AM
I too suffer terrible pain in my hands and ankles/feet. Drs. at Mayo told me 20% of people with FMS have pain issues. I now know that the pain in my hands is because of Lupus. My pain is not in joints. It is in connective tissue....feels like firecracker sparklers are going off in my veins. I really have not found a relief. Motion really hurts.
Let me know if you find something that helps.