View Full Version : Hurting and impatient

04-26-2011, 09:45 AM
Well, I haven't posted in a while....I was hoping that maybe my symptoms would go away if I just ignored them and unfortunately they have not. It has been since last October that I started noticing some major symptoms, but now that I look back I have had some of them for the last couple of years. I was diagnosed last January with Raynauds by my Cardiologist, Neurologist, and then my Rheumatologist. My Neuro and Cardio mentioned lupus. My Neuro even mentioned the rash across my nose and cheeks. My cardio ordered blood that came back pos for ana with 1:80 titre. Then the Rheumy ordered it 3 weeks later and came back negative. My Rheumy dxed my with Raynauds and Fibro. I am 40 years old. I am supposed to go back in July to get tested again. My symptoms then where weak arms and legs, pain in joints, numb feet and hands and discoloration. 7 weeks ago, I woke up with the excrusiating pain in my right groin. I could not move my leg. I went to GP and she gave me pain pills and two days later it eased up, but as of now, I still have pain and discomfort. My GP ordered an ultrasound of abdomen and CAt scan of abdomen. Nothing was found. I am at a loss with this. I have low grade fevers on and off every week. I have been on antibiotics 9 times in the last year for severe bronchitis 3x, sinusitis 2x, urinary tract infection, Cellulitis, light case of pneumonia, and ear infection. I just don't understand why no one can help me. I need to go back to the GP for my groin, but I have run out of patience. I just keep living with the pain in my legs and feet, weakness in arms and legs, pain in groin, and constant off and on sick (especially sore throat and cough). I cry over the pain 2x a week. It seems like when the rain came in the last few days, my pain was the worst. On top of these symptoms, my mind doesn't seem right. It almost seems numb. I can't comprehend things at all. My teenage kids laugh at me because I seem so stupid anymore. Its as if I am not even present. Literally like my head is numb. People have to repeat things to me all of the time. That is probably the hardest thing I have had to deal with. It is very depressing. Does anyone have any advice for me?

Linda From Australia
04-26-2011, 07:14 PM
Hey Ronnie, you don't happen to live in Perth do you? I ask that because it has been raining for the past few days.
Yeah - I get it - life just sucks doesn't it. I had a serious talk to my 18 yr old about not being so angry with me if she has to repeat things so many times, I explained that when I am in so much pain I really don't pay that much attention to what she says, because I am just trying to cope. I asked her to be kind to me, not to rub it in my face that I am forgetting things and reminding me about how horrible this disease is. She doesn't necessarily say rude things to me anymore, but she does give me the look. You know - the typical teenage look.

04-26-2011, 08:07 PM
Oh I am so sorry for everything you are having to go through! Not sure where you live but weather changes can make us hurt really badly. It is so frustrating when no one can help us but our body is out of control. Please refresh my memory Ronnie, have you been diagnosed and what meds are you on? You don't have to suffer like this! You have to be your own advocate and make the doctors listen to you! I wish there was more I could do but please remember that we are here for you!

04-27-2011, 07:09 PM
Thank you so much for all your kind words. Back in January my rheumi dxed me with Raynauds and Fibro. Since then I have been sick with many different things and running fever on and off. I have been to my GP and on many different antibiotics. When I don't have any symptoms, I still run a low grade fever. 99-100. My GP then sent me to another Rheumi she knows today. He mentioned my maylar rash and now believes I may have CREST. He said he is not ruling out LUPUS even though my recent ana was negative. I have had 3 test done. One pos and two neg. My raynauds is pretty bad. I also have the part of CREST that starts with a T. He said that is the lacy vein look on my legs. I also have esophagal problems. Anyway, right now it is just Raynauds and Fibro. I should be getting my blood tests soon. I have also had some real major groin pain on my right side for the last 2 months. Nothing found on ultra sound or ct. I asked them to run a white cell count in case infection in joint. Has anyone had any pain in their groin? My cardiologist prescribed me some medicine when he saw my raynauds back in Dec. but my rheumy then told me to wait. Not the rheumy I met today said he wants me to take something. He sent the prescription in, but haven't picked it up yet. He said that the bad blood circulation that I have can be causing major pain in my legs.

04-29-2011, 02:48 AM
Hi Ronnie,

Sorry to hear of your discomfort and suffering such alot.

I have Raynauds like yourself and that's a night mare on it's own and it will give you severe joint pain besides anything else being diagnosed because it hurts the joints badly because of the cold and Raynauds can't abare to much heat either and I use Steroid based cream off my Dermo to help, he wanted me on presidone straight away to help it but i can't take it because of counter reaction with another drug i take and besides that Fibro carries a few symptoms to put up with besides.
Have they tested your blood for Deep vein thrombosis because they may be running blood tests but if they've not tested for that they won't know, i had it badly and had to go on wulfrin, it gave me survier pain in the groin and carf and when i was scanned my left leg was full of clots combining together. How you can tell yourself is if your leg/legs start swelling going inflammed and the skin tightens up also because those are the signs.
I really hope you have a less pain free day. ~ Hugs Terri~ xxx