Hello, my name is Bonnie and I am new to this site. I have had Raynauds for several years in my hands and feet, very uncomfortable especially when cold. We moved to Florida a few years ago to escape the cold New England. In August I had extensive foot surgery and things started to go downhill from there. My foot was purple in color most of time and my ankle and leg started swelling. My muscles and joints in hands, arms and legs began to hurt awful, knees especially. I cannot sleep at night as I am in so much pain. I feel fatigued most of time and attributed that to not sleeping at night. I also developed a rash by my eye, left side of face, arms, foot and leg. I went to my GP for the rash and he thought it was a food allergy and gave me meds. I didn't tell him about all the pain cause I assumed it had to do with the recent surgery. When I went to the foot surgeon and told him nothing has changed and I still have pain and swelling he ordered a doppler test to see if there was a blood clot in my leg due to the swelling - thank god there wasn't. He decided to run blood tests to see why I wasn't healing and why I felt so bad. When he went over the results of my tests, he asked me about Lupus and my Raynauds. My ANA test was a high positive but the RA was negative. He referred me to a rheumatalogist the next week. The rheumy went over everything with me and did more blood work. When I saw him again, he said the tests were ok, but because I had so many symptoms of Lupus, he was treating me for that and put me on Voltaren for 6 weeks. That med did nothing for me and I continue to feel the same way, I have barely enough energy to make it thru the day and the pain is terrible. I saw him this past week and told him that med did nothing and I felt worse and my Raynaud's seemed to be worse, my hands are purple most of the time then red and I had tingling and numbess in both hands and difficult to type. I showed him 2 callous I developed on the tip of my fingers and he asked me if I ever had ulcers? When I said no, he didn't elaborate, what does this mean?? He's a dr of few words, listens, writes stuff down but that's it. He put me on Procardia for Raynauds and Feldene for the joint pain. We'll see if this works. I hate feeling like this. I used to exercise and work out 2 hrs a day now I'm lucky to just walk. I know that exercise is important and push myself to walk everyday no matter what. My husband has been great and helps me out which is good. Thanks for listening and I am so glad to have found this website.
welcome to the forum. please excuse the lower case as i have capal tunnel and sometimes it just easier this way. im sorry to hear you are going through this.
i dont know if this will help you but i'll tell you a little about my story. im 38 yrs old and for about 1 and half yrs. ive been searching for my diag. for a yr. i was told by a nuer. i probably had ms. then i came up with a malar rash and rash on my hands, ankles, and arms. so, she sent me to a rhumy. i have seen him 3xs and even with a high ana of 1:320 and my malar rash and so on he has not diagnosed me. he put me on prednisone for my symptoms to see if it would work (joint pain, weakness, fatique, headaches, low grade fevers, pain in hands and feet, dizziness, ulcers in mouth and nose, blurriness, tingling and numbness along with a drop foot most of the time) it did work pretty well but did rip up my stomach.
i went to my gp doc because i needed to get a referrel for my dizziness to an ENT. i had never seen this doctor when we talked about everything and he saw my rash coming on from the flourest light(ive read alot of people with lupus have symptoms arise when exposed to flouresent lights) he told me i definetly had lupus and he said i also have discord lupus and my rhumy needs to put me on plaqunil ( a drug used for lupus) right away. he said he is going to write him right away, and that if he doesnt put me on it he would. i do think my rhumy is about to diagnose me anyway. he said from the beginning he wanted to watch my symtoms come on. nice guy huh.
also i have read it sometimes take a while for stuff to show up in the blood. i also have raynauds and live in VA it has been really painful. i wear gloves in the house. i dont know if you have lupus, but i do know sometimes for alot of people it can be a long road to a diagnoses. i am just learning about all this, but there are alot of people on this forum that maybe could answer your some of your questions. they have helped me.
I'm no expert, but maybe I can shed some light on some of your questions. Skin ulcers are listed as one of the symptoms for Lupus. You may have them and not know it though cause they are usually painless........... my dentist told me I had sores in my mouth which I never knew about. He wasn't sure what they were from until I told him about all my autoimmune dx's. Lupus is hard to dx cause there is no specific test for it. They go by blood tests and symptoms..... some Drs. dx it easily, while others never seem to want to no matter how many symptoms you have.
Feldene & Voltaren are both non steroidal, anti-inflammatory meds which should be for the pain, but they aren't common on the Lupus or RA boards that I've noticed. I wonder if they're not very potent kinds???? The Procardia is a calcium channel blocker often used for high blood pressure (also Raynauds). I've tried 2 other types for my Raynauds and neither of them worked for me. They're supposed increase circulation etc. Your Raynauds sounds really severe.... I think you might want to get a second opinion from another Rheumy about all your symptoms.....it sounds like your GP knows more about this than the specialist. About your callouses - is it like your skin is dying on the ends of your fingers? I literally use a nail clippers to cut it off cause it's so awful & thick (much worse in the cold winter now). None of my drs. have ever told me if this is from just the Raynauds or from the Scerloderma (you might want to check the symptoms of this disease too). My skin and body also seem to have trouble healing too. (I plan to avoid any surgery like the plague.)
Like Sha said, I think you should give the plaquenil a try as soon as possible. It took about 6 months before it worked for me and I think it helps alot.(It wasn't a cure, but it lessoned the symptoms) They claim it also helps slow the progression too. Also, it doesn't matter if you have a diagnosis yet or not.........because of your high ANA, they seem to know you have some autoimmune disease and that's usually prescribed for most of them. Most of these diseases don't have definitive tests and the symptoms are similar for so many of them. I know I had some of these diseases for yrs. before I was diagnosed with any. I finally got so scared that I issued a veiled threat, and 'lo & behold' the Dr. finally ran some more tests which led to the start of discovering all the diagnosises I have. By the way, my RA didn't turn positive till almost a year after they diagnosed me with it. I'd suggest you do a lot more research and find a better Dr.if you can. Write things down, like symptoms and questions for the dr. etc. Here are some good research sites that might help you: [url="http://www.mayoclinic.com/findinformation/diseasesandconditions/index.cfm;"]http://www.mayoclinic.com/findinformation/diseasesandconditions/index.cfm;[/url]
Hope some of this has helped. Good luck & take care, Ann
[This message has been edited by Ann S (edited 01-29-2003).]
Hi Ann and Shasha
Thank you both for sharing your stories and some helpful advise. I know this will take time for dx, I just wish drs had better answers! The procardia for the Raynauds does not seem to be working at all, my hands, feet are still turning white, and purple and my hands are so red after and I seem to have a rash on my knuckles. Those callaous (sp) on my 2 fingers are thick white skin and there's like a red-purplish ring around them, guess I'll ask him when I see him in 2 wks. Have you ever had a rash by your eyes(outer just below the eyebrow and down around the bottom) -I got it again this week - they are like little white bumps, itchy as heck and then red also on the bottom on my chin. Plus my head and ears and face itch - I've used the same shampoo for years so I know it can't be from that and I put moisturizer on my face all the time so don't know why this is happening but the itching drives me crazy! Thanks for listening and I hope you both are feeling better. P.S. One of my co-workers has RA and she told me it took 6 blood tests before it came back positive and she was in so much pain but they recently put her on new meds which is helping.
There's no red ring around the ends of my fingers where the skin is dying. I've never experienced the rash around the eyes that you are talking about either. My ears and palms of my hands used to itch all the time........ none of the doctors ever had a comment when I'd bring it up. It hasn't bothered me since I can't remember..... maybe the plaquenil took care of that symptom. I'd make sure to mention all these things to the Dr. Different people have different symptoms and/or it could be from some other AI disease. Ann
I'm new to this board too. I have Raynauds. I have those callouses too!! I have reddish, purple marks under my skin, and the area seems to be callousing up, where those marks are. I showed them to 2 different drs. and they said they were from my shoes. I know they aren't. They only exist where the ulcers are, and are reddish with a purple ring also. What did your dr. say it was from? I take Procardia and Prednisone. They are trying to figure out my other dx, but no luck yet.
My derm. thought it could be scleroderma, but nothings definite yet. One also said lupus, but no one is certain.
Good luck to you!!!
"Coldfeet": My callous are on some of my fingertips and it looks like dead skin and is thick. These fingers are the 1st to turn white then purplish. My toes are the same except the callous are on the bottom of my feet but on my big toe, the nail is purplish and like black/blue around the skin, this is new.
When I went to the dr yesterday, he increased my procardia to 60mg a day as 30mg was not doing anything. Feldene was not working for the joint pain so he put me on Darvocet for a month. Most times the pain in my knees, legs and ankles is so bad I can hardly walk. I am also having a lot of pain in my right hand,wrist&elbow and my 1st 2 fingers are so swollen. He told me to get a wrist support for my typing as my job requires 6-7 hrs day plus I'm going to college part-time. Talk about stress! I also asked him about the headaches I get all the time and the pain in my neck to my shoulder blades. I also told him my face gets red and hot at times.
Does anyone else get bad headaches? Lately I can't even tolerate lights being on when I get these headaches.
At least this dr visit he actually spent time and answered my questions. Next month I will ask him about plaqenil (sp?)
This has been such a frustrating time and I'm glad I found this site to vent and share stories. I hope everyone is doing ok.
I have Raynaud's and I had an ulcer on my second toe. It started as the red/purple spot you are talking about and then it just became so swollen, I could not walk. That is when I was diagnosed w/RA. I am on 60mg of Procardia, Voixx 25mg for the pain and inflammation. Symptons are not getting any better. The only thing I am not experiencing is the extreme swollen toe that was caused by the ulcer that formed. I still get a red nose, red swollen hot knees and fingers swollen in the morning and then wrinkley all day, freezing cold hands, feet all different colors, blotchy red spreading up my calves and headaches. I have a history of kidney stones with an elevated calcium level in my urine at this time and the drs still claim it is just RA. I think there is more going on but all blood work (18 tubes) is coming back within normal range. Any ideas or help anyone can offer?
the rashes on face and chin and the itching sounds like Lupus symptoms for sure.. you need to get your rheumy to get you on Paquenil as soon as possible.. it will not help real quick.. but will in the long term.. see if he can put you on some prednisone too.. the prednisone will take out the inflammation now.. and will cut your pain in half or more..
it took them 22 yrs to dx me guys.. and in that time the Lupus destroyed my lungs with pneumonia upon pneumonia for 5 yrs.. now my lungs are nothing but scar tissue and stiffness.... do not let this happen to you..
write down every single ache and pain you have in like a diary.. and take that to your rheumy.. make him read it.. then examine you.. do not let him brush off any question you have for him.. write them questions at the back of your diary pages to him.. i literally sat on my rheumy for answers.. i told him flat out.. you will not leave this room today until i have answers.. and if you don't have them answers.. then point me in the direction to get them.. i'm tired of living in limbo.. he stepped up to the plate and dx'ed that day and put me on the Plaquenil.. plus a very strong med for my stomach.. he said my pulmonary doc would handle my prednisone.. because i take that anyway for my lungs..
it helps to get aggressive sometimes with these guys.. make them make a decision on you.. or make them give you another doctors name .. some doc's are so afraid of being sued that they do will anything to keep from dx'ing a patient.. even though it is for the patients good..
sit on em.. i'm not very big.. but i made it clear that if i didn't have answers that day.. he wasn't leaving the room without me banging his beanie against a wall first.. it worked.. hehehe
SLE Lupus-22 yrs., Pulmonary Fibrosis-54% of lung tissue left.
Prognosis= not long