View Full Version : new member and very confuses

03-02-2009, 04:51 PM
Hi, My name is cora and I have many questions. I have had confusing symptoms for many years. I was finally sent to a rheumatologist who thought maybe I had lupus but was not sure because my symptoms are so vague. I have seen him 4 times and he finally told me my last visit that he is not sure if I have the disease because my symptoms are so vague and my lab tests are normal. I have hives, which is why I went for help in the first place. I have sore hands and have lost much of the fine motor movements. My hands feel like they want to bust out of their skin and I need to cool them off, or are so cold the only relief I get is when I lower them below my waist. I also have trouble with headaches with to much light. I am on antidepressants, sleep meds, and benadry at night. I have been told its my nerves, I am depressed or just being a woman. I am very tired of all the problems I have been having, all the pain and discomfort does not make sense. Knee pain and swelling, the more activity the more pain I have. Doctors are unable to see any swelling or any change in the bones. Sometimes I get very tired, sometimes I can't sleep and most times I am unable to do physical exercise. I try to walk when I can. Sorry this is so long but you guys are my last resort.

03-02-2009, 05:14 PM
hi cora....i am so sorry to hear about your plight.....the "not sure" time is so frustrating....during which you are in extreme pain. Have you been tested for fibromyalgia? some rheumies do not recognize, so you should ask your dr. about this. It is a simple test that they can do by applying pressure on various trigger points.

Hope you find relief very soon,

03-02-2009, 10:33 PM
I have had a physician put pressure on my hands, chest, legs, and knees, the only place there was discomfort was in my hands. I was told that it was probably not fibromyalgia. I think the doctors are confused because the pain comes and goes with no rhyme or reason. Summer times is usually when I feel tired and fatigued along with severe hand problems.

03-02-2009, 10:46 PM
hi dolocot, I was first diagnosed with fibromyalgia in 1996. I too have a lot of problems with my hands. They hurt not in joints but in small tissue. They also become feverish, hot to the touch, and feel like they are being held in an oven. The drs. at Mayo said 20% of people with fibromyalgia have problems with their hands.

Did the drs. check for trigger points in your shoulders at the base of your neck, and in your chest. There are several points at the back of your neck going to the back of your head, and two points on either side of your chest. The pressure points in your knees are not in the joint, they are actually in the front of your knee below the actual knee joint. If you have fibromyalgia, these points are very tender to pressure.

Also with fibromyalgia, range of motion for turning your head is very limited. I don't know if this stuff helps, i just wanted you to get them checked...but first make sure the dr. even recognizes fibromyalgia.

03-03-2009, 11:00 AM
Hi mountaindreamer,
Thank you so much for responding to my questions. I was so surprised when you mentioned about your hands burning. My hands feel hot to touch and sometimes the thumb turns red and they are so tender at this time. But then sometimes they are very cool and feel numb where I put them below my waist and they feel better. I will mention my primary doc about fibromyagia and see what she says. The rhemat. doct thinks I am just a complainer so I really don't want to see him agian. Is there a site for fibromyalgia that I can go get info. Thanks agian

sick n tired
03-03-2009, 12:48 PM
I also have problems with my hands as well as fibromyalgia. My doc has diagnosed lupus in my interconnective tissues...that is what hurts the most on my hands.

03-03-2009, 12:50 PM
I know what you mean....my dr. can squeeze the (you know what) out of my joints, and they don't hurt....but the slightest touch in the tissues and i come off the table.

sick n tired
03-03-2009, 12:54 PM
hey mountaindreemer,

If you press right between you fingers that is one of the areas that hurt. It is a sick pain that radiates to the bone, or at least it feels like it.

03-03-2009, 01:26 PM
i would have to deck anyone who tried.......

sick n tired
03-03-2009, 01:29 PM
LOL Mountaindreamer...I hope I don't do that to my rheumy next time :-)

03-03-2009, 01:31 PM
Hello Cora,

I just wanted to welcome you to our group. I hope you can find the answers you need. Please make yourself at home here.


Angel Oliver
03-03-2009, 03:33 PM
Just to say hi and welcome. I feel the frustration and so understand it. I too have quite a similar sensation with my hands and arms. At the moment im typing with 1 finger as my left arm n hand is quite numb like a dentist visit, if you know what i mean. The right side is the same but not as bad. It s always the case....you suffer with all the symptoms then when its time to see the doctor....that day is a good day so all what you have suffered isnt in sight enough for the doctors to see.Dont let that stop you trying to make sure they know ALL what you are experiencing. It gets to a point with Doctors where you are convinced they think youre making it up.WELL YOU ARE NOT.So keep coming here cause we all understand and hopepfully will give you courage to make the doctors understand the pain you go through.


03-03-2009, 06:59 PM
Just wanted to say Hello and Welcome Cora........

You've joined a place with plenty of compassionate, understanding, supportive people. There is always someone to help answer your questions and help you as you learn more about Lupus and it's overlapping syndromes.

I'm glad you decided to join us.


Lori :)

03-03-2009, 11:59 PM
I can not believe all the support here. I really thought I was going crazy. It seems like I have a different pain every day. The doctors have told me it is because I am to anxious or that I am doing this to myself, hence the antidepressants. None of the psych meds are working and I now see why not. The info you have on this site have helped a lot. Unfortunately I think I better find another rhemo doc, one that listens. Does anyone have trouble with hives or heat rashes with exercises or getting to warm. I have been dealing with this since I was a teenager and they seem to be getting worse the older I get. One good mark: I have been wearing sunglasses all the time when I am outside whether it is sunny or cloudy and my headaches have decreased quite a bit. Using a suggestion I found on this site. I am really glad I found this site. Someone to talk to Thanks

03-04-2009, 05:21 AM
I have read a thread on this site about problems with itchy rashes especially after exercies or being over heated.....so yes, many of us do suffer from this,

I am sure some advice will be along shortly.....