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Erinlia
02-09-2003, 10:24 PM
I just found this web site. I'm 21. I've been very sick for a little over 10 years. My illness looks a LOT like Lupus only I havn't had a possitive ANA...only slightly at times. I continue to stump doctors and continue to search for help and a diagnosis. My question is, among other things, I have very bad inflammation in my hands and feet. They are swollen, very hot or very cold, red , purple and very painful. I'm not able to wear shoes. They get very painful lesions on them that can become open sores that ooze and are hard to heal. Do any of you with Lupus experiance something like this? This was my first symptom when I started getting sick years ago. Also when my fingers get real bad the white part of my finger nail sinks down causing a deep dip across my nail. I've searched for pictures of nails like this on the internet but never found anything like it. I'd really appreciate any feed
back. Thanks!

muriate
02-10-2003, 09:29 AM
You can still have lupus with out a positive ana. It sounds to me like you have a form of vasculitis. Which can cause those symptoms you explained with your feet and hands. When your small and large vessels swell it makes it difficult for you oxygen to be carried buy the blood to different parts of the body. Kind of sounds like a form of clubbing which means the oxygen is constricted some how. Reasearch vasculitis and ask your doctor about it. Also make sure you are eating a low sugar low salt diet this will both help with healing and swelling.

God bless

Saysusie
02-10-2003, 09:30 AM
Erinlia:
Welcome to our site! I am sorry to hear of one so young suffering for such a long time! We are here to help you in any way that we can.
Skin disease is very common in Lupus, 60%-65% of people with Lupus will have skin rashes or lesions during their illness. There are several forms of rashes/lesions that are specific to Lupus: Discoid Lesions, Vasculitis and Coin-shaped, non-scarring lesions. Your symptoms sound a bit like vasculitus, which is also common in Lupus patients. Vasculitis presents lesions in patients with Systemic Lupus erythematosus-
Vasculitis: This is an inflammatory disease of the blood vessels - these lesions appear as red welts on large areas of the body. They can also have small lines in the cuticle nail fold or on the tips of the fingers or can have red bumps on the legs. The bumps may ulcerate and produce painful red nodules
Discoid Lesions: these are also coin-shaped and are scarring lesions. They are commonly seen on the face or areas of the body which are exposed to the sun. They can develop thick, scaly formations and the layers underlying the skin can become thickened. Doctor's believe that Dicoid lesions in Discoidal Lupus are the result of an inflammatory process in the skin where the lymphocytes (T-cells) play a major role (as opposed to SLE where autoantibodies and immune complex formation are responsible).
The second type of Lesions are non-scarring, red, coin-shaped and very photosensitive. These are subacute cutaneous lesions and can often look like psoriasis. These lesions do not produce permanent scarring.
Treatment: Doctors use steroid creams, injections of steroids into the lesions, hydroxychloroquine (like Plaquenil) alone or with oral steroids and sometimes with Vitamin A derivatives (like Tegison).
Sun protection is extremely important as well as avoiding long periods of sun exposure.
Some common symptoms of Lupus include high fever, extreme fatigue, chest pain, hair loss, Pale or purple fingers and toes, swelling in the legs, around the eyes and swollen glandsJoint pain. About 95% of people with SLE have joint pain at some time. Joints may be red and warm, and may swell; morning stiffness is also common.
You may also suffer from Raynaud's. Raynaud's phenomenon is a problem that affects the small blood vessels of the skin. Normally the body narrows (constricts) these blood vessels when the skin gets cold. This helps conserve body heat. During an attack of Raynaud's, the blood vessels become too small, severely limiting the flow of blood to the skin, especially in the hands. Stress or exposure to cold temperatures may trigger an attack.

During an attack of Raynaud's, the fingers and hands (or, more rarely, the feet, nose, or ears) may:

Turn pale and white and then turning blue.
Feel cold to the touch.
Feel numb and tingling, as if they have fallen asleep.
If none of these answers have helped you, please let me know and I will do further research. Please take care of yourself and know that we are here for you!

Saysusie

Erinlia
02-11-2003, 01:26 AM
Thank you Muriate and Saysusie for your help!

I do know some about both raynauds and vasculitis. My handles and feet don't turn white or pale. Cold does make them worse but that is not the only thing that affects them. Also I don't get a sudden attack that seems to go along with Raqynauds. These things make me lean more toward something like vasculitis rather than raynauds. My GP has been calling it vasculitis, but we're not definate. My problem is, my GP, is totally stumped on what's going on in my body. He's done all he knows to do. At this point he's made up his mind that I have CFIDS and is no longer looking any further. He may be right but I just can't agree at this point. I haven't heard of CFIDS patients with vasculitis like I get, or the lung damage I have, plus a few other little things. I feel like we can't rule out lupus. The more I read about it the more I feel like it really sounds like it fits what's going on in my body. But i need a doctor who will really seriously look at my case and help me figure this out.

I guess what i'm trying to find out is if there are other lupus patients who experiance the same kind of inflammation on their hands and feet.

I have a rhuemy that I've seen a few times over the years. I live in a small town 5 hours for him or other specialist so it's hard to see them regularly. I feel like I really need to find someone who will help me get a diagnosis even if it means some long drives. I have all but a few of the symptoms of lupus.

Thanks for your help!

Saysusie
02-12-2003, 08:18 AM
Erinlia; In order to be diagnosed with Lupus, doctors use a list of 11 criteria - you only need to have four (4) of the eleven!. Here are the 11 criteria: Malar rash, Discoid rash, photosensitivity, oral ulcers, arthritis, serositis, renal disorder, neurologic disorder, hematologic disorder, immunologic disorder, antinuclear antibodies (ANA). Remember, you only have to have four to be diagnosed!
30% of people with Lupus also have overlap symptoms which are characteristic with other auto-immune and/or connective tissue diseases. So, no two patients will have the exact same symptoms at the same time. The most common overlaps are: rheumatoid arthritis, myositis, systemic sclerosis, Multiple sclerosis, and Sjorgren's syndrome. Lupus is also a disease that continues to evolve over time - so your symptoms today may not be the same as your symptoms next year!
It is important that you see an Internal Medicine physician and/or a rheumatologist! It might be well worth the drive to do this, as misdiagnosis could be very harmful to you.
The testing process for lupus is complicated and time consuming. Lupus is a very difficult disease to diagnose - it could take well over a year even when being done by a rheumatologist, so I can understand why your GP is so confused. You need a doctor who understands the required lab tests for diagnosis and who understands the disease itself! So, you are right in saying that you need a doctor who can help you figure this out - that doctor should be a rheumatologist or an internal medicine doctor!
Best of Luck - Remember, your doctors are as good as you insist that they be! Ask questions, do research, demand answers!!
Saysusie

muriate
02-12-2003, 08:21 PM
I have the same symptoms with my hands and feet but it has never ulcerated open. Actually it usually comes before a attack. Yes the drives are going to be hard, five hours is a long time. I agree it is worth it though. My rheumie is 2 hours away she does alot of stuff over the phone like testing. I choose to go to a internist, that has a second interest in rheumatology. I was able to research the major hospital she is with and her medical background from the internet. Check on the internet the closest major medical center, usually one that is connected to a university. See if they have a rheumatological department. Your general doctor will not have a clue. But that is OK. Hopefully he listens to you and tries to solve this puzzle.

Erinlia
02-13-2003, 02:29 PM
muriate,

All these years I have never heard of anyone else with similar symptoms to mine, in their hands and feet! I would be interested in knowing more about what happens in your hands and feet and what the doctors say about it. I think one reason it's been hard for me to find a good doctor is I live in a small town in Alaska. There just aren't many specialist in the state. I have gone to pediatric Rheum at both seattle and U of Michigan, but they weren't helpful. One gave me a really hard time and didn't believe me. I was young and it was at the very beginning of this battle so my mom and I just didn't know how to fight that at that point. The other Doc was nice but didn't really put effort into figuring anything out. How can she when I'm only there for a short time. Both doctors put me in physical therapy and said I just needed exersize. (It'd fight that now too!) Both times of PT were followed by my very worst crashes. The first time I missed the last half of seventh grade and was NEVER able to go back to school. The second time was when the vasculitis in my feet moved to my hands. So, anyway, I just continue to search and not give up hope! Someday things will work out.

I thought it was interesting that you said your hands and feet symptoms seem to come before a crash. When ever mine get worse it is always followed by the rest of me really crashing with extreme fatigue, pain, digestion and lung problems, rashs....the list goes on. My illness came on gradually when I was about nine and it started with a few of my toes getting really red, swollen and sore. Over the next few years symptoms developed and worsened throughout my body.

stjames13
02-14-2003, 05:13 AM
ERINLIA: Hi and welcome to our board.

Let's start out with the GOOD NEWS.....you have yet to produce a posotive test with SLE.

What you have described to me is DISCOID LUPUS and the possibility of Raynauds syndrome....both of which I have personally.

You may want to talk to you GP about the cold hands and feet and a simple prescription of PROCARDIA XL will take care of that for the most part.

For the leasions the best thing I have found is SILVADENE it is a topological ointment witha type of anitbiotic in it to help fight off any suface infection.

Keep you hands and feet moisturised and dry. DO NOT over wash with soap and after you do use sopp apply some sort of mosituriser.

On thing you can do is to STAY OFF the internet as though it is filled with info it is so wide open to the severity of the cases it dicusses it usually deal with the worst of the worst.
If your seeeing a rheumotoligist that's good if you're not FIND ONE!!!!!!

From what I have rad so far you may turn out to be NEGATIVE with Lupus but have underlying diagnosis such as Raynauds, or Hashimotos thyroidism. Get back to me after you;ve mentioned this to your doc and let;s see how you;re doing then.....until then remain stress free and keep WARM!!!!!

It only takes 3-5 seconds outside without gloves to dry your hands out completely so HELP the docs HELP you by taking care of yourself.

Regards,
stjames

muriate
02-14-2003, 08:53 PM
Yes, I do have alot of the same symptoms. About 10 years ago my hands really started to bother me. First I thought it was infection went thru 3 courses of antibiotics, Next went to a allergist to see if I was having a allergic reaction, Third to a endocrinologist to see if it was a thyroid problem. I went to a rhumie 4 years ago and at that point nothing showed. Until last year my blood work converted over to positive. You definately need a good GP to do the leg work and to rule everything out. Maybe that is why you have met resistance with the doctors. The world of autoimmune is very unknown and each person has something different. I choose to feel as if these things make us special. My hands swell almost 3 times the size, get very hot, turn bright red and the palms have what I call it white spots. My feet and lower legs also swell turn red. I have kept a diary of how I feel and symptoms. This has helped in diagnosis. I have found my hands and feet are the first sign that I am over doing it.

I would suggest keeping a diary of how you feel and symptoms. Somethings such as coffee, milk, red meat send me into a attack oh yea I forgot my period is the big one, and work related stress.

Yes and all the info on the internet can scare the begebies out off you. The way to control symptoms is good life management. Proper nutrition, sleep, stress reduction, activity and or exercise which some days is a walk up the steps.

Be good to yourself,
This will help your immune system
And by being good to yourself you may never convert to a positive diagnosis.

Take care