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nicoletx 03-02-2012 06:35 PM

In need of an opinion on my Raynaud's!
I was just Diagnosed with Raynaud's a few days ago by my Rheumy. I have a lot of blood work to get done, and since I do not have insurance, I am having to split the test up in groups( talk about expensive on self pay).I am awaiting my ana, hep panel,cbc,cmp,cpk,and rf to come in.

Anywho, since I have about a month til my 1st round of results come in, I just wanted an opinion on if it's likely that I have a connective tissue dissorder, and If my Raynauds sounds like a severe case. Here is a somewhat brief description of what I have going on.

I had seen my GP before the rheumy, and my hands, and feet were swollen, burned, ached,and had stabbing pains. I had flesh colored bumps under my toes, purple bruises, and red bumps that quickly turned into dime sized ulcers on the top of my toes. I did notice that my toes were bone chilling cold at times, so the raynauds makes since.However, with all of the other pain i was in, it was the last thing on my mind. My GP thought I had a form of arthritis.
My rheumy confirmed i do not , and all joints look good. After seeing my GP I started having severe sensitivity to light. Lots of floaters when in daylight or any bright light, blurry vision, headaches, and flashes of purple light everytime I drove at night. After that I started having sharp pains all over my body. So painful that it brought me to tears. I would feel hot one minute and the next have chills, and felt dizzy. I then started having episodes of intense chest pains, rapid heart beat with some skipped beats,and shortness of breath. After a few attacks, I was actually sleeping and awoken from my sleep by irregular heat beat, pain, and dizzines. That is actually what made me break down and go see a rheumy.

Other than the Raynauds, she said it could be nothing or possibly a connective tissue disorder. She said that since I did not have a rash, she though it was unlikely to have lupus.

1. Does my raynauds sound like primary, or secondary?
2. Do my symptoms sound like I may have something else going on with my Raynauds, or is it typical Raynauds symptoms?

luca689 03-05-2012 12:13 PM

Re: In need of an opinion on my Raynaud's!
Was a nailfold capillaroscopy done? That can help provide some helpful information. You didn't say if your ulcers healed quickly and for how long you've had Raynaud's. You also don't mention how young you are. So many things can cause your symptoms, both related to and unrelated to AI problems. It is very good that you don't have joint damage. I hope that you keep us updated on your labs and are getting treatment for your Raynaud's to prevent further ulceration!

nicoletx 03-05-2012 01:04 PM

Re: In need of an opinion on my Raynaud's!
I am 29, and no nailfold capillaroscopy has been done. Unfortunatley the ulcers have not healed, I noticed them almost 2 months ago, and since then, new ones have appeared. I am not sure as to how long I have had Raynauds. It was just diagnosed last week. Since, I have posted my original thread, I have been having sick spells where i get very dizzy, sick feelings, chills, and shaky vision ( only during the sick spells). Any insight would be great. A month is an awful long time to live with these symptoms, with no clue on what's going on with my body. Thank you :)

luca689 03-05-2012 02:56 PM

Re: In need of an opinion on my Raynaud's!
Did your Dr give you anything for the ulcers? And any antibiotics in case you got an infection that goes systemic? You must take care of those ulcers lest your circulation gets compromised. Does a thick, chalky white residue that is not pus ooze or come out of your ulcers? That symptom can be indicative of an autoimmune problem but not definately. Same if you have little red dots, or what is sometimes called spider veins. Those sharp pains could be associated w/ Raynaud's as neuropathy but I'm not a Dr, just a patient. I have found that simple anti inflammatory OTC medications to be the most helpful for my pains, which Are from secondary Raynaud's. As for the fevers and chills, keep warm and try to reduce your stress. Yeah right, you are probably thinking, but it could be that you just have a virus or something like that. Unfortunately, your Dr is right, you may or may not have an AI disease at this point. And if you do have something besides Raynaud's, stress reduction is a key part of treatment.

NinNin 03-08-2012 02:53 PM

Re: In need of an opinion on my Raynaud's!
Primary is much more common but ulcers do not usually occur with primary so secondary would be the other option there are many many other CTDs out there than lupus. I have raynauds with an underlying CTD I am still in the process of finding out which one. Mine is probably either lupus or scleroderma. I am only 26 and sometimes these diseases take time to progress. So unless you had a really bad month or two if the health issues persist I would keep perusing it! there are nail fold capillary changes that a doctor can look at with there scope and primary raynauds looks normal an abnormal result would point at a CTD but which one is the question that is the point that I am at good luck!

nicoletx 03-08-2012 06:12 PM

Re: In need of an opinion on my Raynaud's!
NinNin, It's good to know that I am not the only one experiencing this. The whole process seems to be never ending. What symptoms were you having when diagnosed with Raynaud's? You said that you suspect scleroderma, have you noticed any thickening of skin, on your legs, hands or face? I'm just curious to know if you have experienced any of the same symptoms that I have.

nicoletx 03-08-2012 06:28 PM

Re: In need of an opinion on my Raynaud's!
Gdiluca, My Dr. did not give me anything for the Ulcers, and no antibiotics. There is nothing oozing out of them. They are a redish purple color, and about the size of a dime. The only thing that my Dr. put me on was 25 mg Lyrica for pain so that I could actually sleep at night ( which i stopped taking cause it made me feel worse). She told me to keep my feet elevated when possible, and to wear socks to bed.The dr. wanted to get my test results back before going any further. You asked me about little red dots... Could you describe what type of red dots? I do have a few red dots on my feet, and underneath them are small hard bumps ( feels like bone, or calcium deposits). I also have needle sized red dots on my hands , and arms that are smooth, with no bumps underneath. Thanks for the reply.

NinNin 03-08-2012 06:31 PM

Re: In need of an opinion on my Raynaud's!
I went in to see a doctor becaues the skin under my nails were blue and within a few days of that my whole toes were turning blue. At the time I had been diagnoesd with Still's Disease so raynauds was kinda thrown at me from out at left field that was a year ago. Because I had raynauds they started checking for scleroderma and I soon learned that I had many of the same issues as CREST raynauds esophageal issues and the telangiectasia. i dont have skin thickening or didn't I am getting some around the fingernails I'm not so sure it's all scleroderma related or not. As it would be an atypical presentation. You really need to get on some type of cream there is no need for blood tests to treat the raynauds. The ulcers would almost certainly point at a CTD IMO. I've learned a lot about this if you have any qustions, just ask.

NinNin 03-08-2012 06:34 PM

Re: In need of an opinion on my Raynaud's!
Lyrica! omg there are plenty of meds to help with blood circulation unless you have heart issues they are usually BP meds and can drop you BP.. i was on those for a year there is also nitro-bid paste and revatio that works really well but you have to get a doctor to approve it!

nicoletx 03-08-2012 06:42 PM

Re: In need of an opinion on my Raynaud's!
NinNin, What symptoms have you expienced with your Raynaud's

nicoletx 03-08-2012 07:10 PM

Re: In need of an opinion on my Raynaud's!
My dr. did say that if my symptoms did not improve in a month that she was going to put me on blood pressure meds to help with circulation in my hands and feet. What would the cream that you are speaking of help? I only took the lyrica one time and it made me feel awful and almost seemed to make my symptoms worse. She is not doing blood test for the Raynaud's. She is doing all of the blood test to see if I have another disease linked with the Raynaud's. Not to mention that some of the symptoms that I am having sound seriuos, and are really stressing me out( The chest pains, dizzy, and sick spells, and the fact that my vision has been affected). I actually had these issues about 10 years ago but without the Raynaud's. They had tested for lupus and done MRI'S and could never figure out what was causing any of it. Since that was ten years ago, she wants to redo a lot of the test since lupus can present at any time. I am leaning towards scleroderma as one of my ctd's. The skin on my right hand has become so thick over the past two months that I can no longer wear any of my rings that still fit my left hand. I have tried all kinds of anti inflammatories to see if the skin thickening was caused by inflammation and nothing will help. I have a few more weeks until my test come in, and I go back to see the doctor.

NinNin 03-08-2012 07:51 PM

Re: In need of an opinion on my Raynaud's!
Well I do not get sores. I have slow heal time when I injure myself If I get a blister it stay forever. I get cold numbed and stinging fingers. Even when they are cold they can burn. I get lots of dents in my nails (not sure from what exactly) but i have really bad nail fold capillaries the capillaries bleed out into my cuticles so i have red spotted cuticles sometimes they bleed so much it comes up from underneath the cuticle where I can't actually wash the blood off. It doesn't happen very often, and certainly doesn't happen with primary raynauds! My feet and hands are effected and I hurt myself pretty easily b/c they are so numb but other than cuts and bruises no ulcers to date! my feet get bluer than my hands but my hands are much more painful and sometiems they swell up in the knuckles but are still cold to the touch go i get the bleedson my toes as welll. And get quite a few splinter hemmorhages at a time when i do get them but i don't have them all of the time.

luca689 03-09-2012 07:39 AM

Re: In need of an opinion on my Raynaud's!
The hard lumps I have seen described by several other people as being diagnosed as calcinosis. However, I am not a Dr but only a patient and only your Dr can diagnose you!. Primary Raynaud's Can exhibit capillary dropout if the vascular damage is extreme or has occurred over a long period of time, so that is why a nailfold test is not completely definitive. That is why I asked your age. Skin thickening of the hands in scleroderma usually follows a bilateral pattern of swollen puffy fingers and/or toes so much so that the look like sausages and then comes the skin hardening, in limited systemic scleroderma. There is also a form of scleroderma called sine in which the skin never thickens or hardens. Let's see, I wanted to address the medications for Raynaud's. They are usually calcium channel blockers to start, and although not everyone benefits from them they certainly help most people. I've been on several throughout the years. The chest pains may very well be due to stomach and esophageal problems, as it was in my case. BUT, again, only your Dr can tell for sure. I also wanted to mention that ocular migraines can cause vision problems and can be caused by scleroderma. As far as your ulcers, you really need to address those. Many people use loose gauze, splints on the non ulcer sides of their fingers to keep from knocking them about, which will help with the pain somewhat. I've heard of many people using various types of OTC antibiotics as well. People have also had success with nitroglycerine Rx creams and Ravatio Rx creams. Staying warm is crucial as well. I always have gloves with me, even in the middle of summer, LOL, especially if I have to go to the grocery store, or even drinking a cold glass of lemonade! As you have probably already guessed by now, I have one of the forms of scleroderma. It is a rather rare disease that many Dr's are unfamiliar with. If anyone has any specific questions or just want some support, please feel to PM me. I've had this diagnosis for, geez, almost 10 yrs.

NinNin 03-09-2012 10:25 AM

Re: In need of an opinion on my Raynaud's!
Gdiluca - I have done a lot of research on nail fold capillaries and I am wondering where you learned some of this info from you seem very knowledgeable! Usually the NFC test is the gold standard in differentiating between Primary and Secondary Raynauds and not everyone with a CTD will have abnormal capillaries but yes if there is damage to the nail fold area it can change it but there are very distinct patterns for each individual disease. This is where it really intrigues me Lupus, Scleroderma, Dermamyositis, APS, and UCTD all have very distint patterns. There is a Dr named Dr. Cutolo who is working on making it a diagnostic criteria for Scleroderma over in the UK! I hope the US gets to this point as well. I am a total science geek and got a USB microscope they cost like $24 and took my own pictures since I was told they were abnormal but then the doctor that said that left her practice and I am having trouble getting anyone else to look at it. I had a doctor go as far as to tell me that my capillaries are my "normal" nothing I've read says this is a normal phenomena but anyways. I took pictures I haven't been on this site in a while I'll have to see if they do photo sharing still. the original rheumy said it was scleroderma pattern but my other doctors haven't looked and I don't know what it all means i wish a doctor could tell

NinNin 03-09-2012 10:27 AM

Re: In need of an opinion on my Raynaud's!
The cream is called Nitro-Bid paste and it's the only medicine that I know of that isn't ingested for Raynauds and you have to be really careful for it because it is nitroglycerin cream that people use for chest pain but you use it on your hands and feet and it helps dialate the capillaries

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