Fingers feel like having super glue on them
Posted 16 May 2008 - 11:29 AM
My fingers have started to feel like if they have super glue on them (mainly the fingertips of the index finger, thumb, and a little less the other 3 fingers). On the index finger almost the complete finger is affected.
I have had my problems (most likely scleroderma) for a year now...still dont have Raynaud, have no ANAs, no other blood changes, but have Sicca (mouth, eye) and have some blood circulation problems on the hands (mainly caused by emotional stress), but its not as severe as Raynauds.
The fingers are definitely swollen in the mornings and more and more even throughout the day (not severe, but noticable..in the mornings they feel stiff and there is almost no change for the ring (marriage band) to put it on...in the evenings sometimes it works reasonably well to put it on. The skin on the fingers lost its natural fingerprint texture...(still visible, but not feelable anymore)..I am sure I could rob a bank without leaving prints (interesting questionable positive fact :-) ?
Anyway...more serious....but this feeling of superglue is very characteristic...who else has experienced this...the skin is also shinier and feels a bit like ruber or plastic on the most affected areas.
One more thing I noticed...my nails slightly curl down and seem to detach from the skin closer to the finger with each cutting (skin that shows up after cutting also hurts and it becomes more and more each time).
I have finally an appointment in the DKD (German Diagnostic Clinic) that seems most promising for my case (no blood change, no Raynaud) as they specialize on "complex cases"...however it took 4 month to get an appointment.
I am a bit worried, as I also have some cough for 2 weeks now ....and I am not quite sure, if this is related or not. (it is not dry...which calms me down, as most web sites only talk about dry cough in conjunction with lung invovlement)...however it is only there from time to time and seems to persist and there seems no other reason for it. Nevertheless it is another 2.5 month untill I have my appointment in the clinic so that they could find out.
As I have reported earlier the husband of a friend of mine (who I got to know about the German support site) had diffuse SSc and he passed away shortly after I tried to get some help for her husband here on this site....after only 4.5 years into the disease with severe lung and heart involvement leaving his wife and 9 year old daughter behind...this example scares me (so it seems to be true...one risk factor seems to be male.. like many websites tell you and like I am myself).
Posted 16 May 2008 - 04:06 PM
I'm glad you found our site but I'm sorry its due to concerning symptoms. It is very hard to deal with the initial symptoms of any complex illness, and great that you have the upcoming appointment at the diagnostic clinic.
Please keep in mind that I have no medical training, and verify everything I say with a reliable medical source.
There are a few things in your favor, as far as the possibility of getting out of the woods of scleroderma, and that is that it is far more common in women than men (perhaps by a 3 or 4 to 1 ratio), and it most commonly onsets with Raynaud's. See What is Scleroderma?
But there are dozens of causes of swollen fingers, some of them quite manageable and some of them very serious. The diagnostic clinic sounds like a very good thing. See Mayo Clinic: Causes of Edema.
Meanwhile, please do not ignore any of your symptoms. Be sure to report them promptly to your primary care doctor, including your cough. As I understand it, the sort of cough that could occur with scleroderma lung involvement would only be when things are in an advanced state. The first symptom is more likely to be shortness of breath. However, you might have heartburn causing the cough (which could explain it being intermittent), or an infection or allergy.
You might also want to consult a dermatologist while you're waiting, for the skin and nail changes. Each of our symptoms needs to be evaluated in its own right. Its possible to have many "stand alone" health issues that don't add up to an overall disease, which makes the process of figuring everything out all the more daunting, for everyone. Good luck to you!
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099
The most important thing in the world to know about scleroderma is sclero.org.
Posted 16 May 2008 - 10:32 PM
thanks for the advice.
The male/woman thing is in favor for me...but it is like a physician once said:
If the odds are 1 to a Million (and it is in my case being a white caucasian male under age 40) and you are the ONE who has it, then the odds are 100% in your case....
I know that many things in my case are odd and dont quite match the "usual" onset pattern .... (see earlier posts from January for more details)... but yet there are also a few things that are undeniably leading in the direction of diffuse SSc.
First: at below 40 years and having been perfectely healty untill the sudden onset it is highly likely something systemic, that changes so many things at once.
Secondly which other disease gives you Sicca, swollen fingers, a half Raynaud, tendon friction (rub) which is audible and hurts (especially around the spine) and in addition changes the face (smaller mouth) and changes the texture, appearance and feeling of the fingers (smooth surface, shiny, no fingerprints anymore). Add a thickened band of the upper lip to it...and some strangely blue lips and ears that sometimes are cold and sometimes hot. And add to this vision problems (cartaract like).
Add to this some gastrointestinal problems never experienced before and some nail changes and then I guess things very much point in one direction...and that is some connective tissue disease - which maybe debatable - most likely diffuse SSc after all I have found out so far.
Clearly it is hard to find a physician who, at first sight would diagnose you in this state with it - I have it now a bit more than a year....but I would not be the first who has this problem. For me I suspected it the first time after about 6 weeks. And I was almost certain after about 6 month...and the more symptoms appeared, the more it became clear...yet, due to missing ARA criteria (but when would you have those...certainly you would not have those in year 1..). And as I do not show ANAs...(but also that does not seem uncommon) it is even harder.
Yet, I clearly recognize, that the changes take place (even if not always visible for others).
So I certainly hope for the more specialised diagnostic clinic, that tries to piece all the puzzle pieces together into one bigger picture and not just looking at one symptom in isolation and not believing the other doctors results.
So, I do not think, there are many other outcomes possible (I would hope...but I do not believe anymore).
It is a major pitty being the income provider in our family and having to young kids and a house in a quite expensive city in Germany where my wife would have major difficulties to pay for the bills (and you do not just move like that in Germany like you could in the US...there are many more hurdles here starting with loans that you can not just pay back when you sell).
So obviously psychological stress in this situation is a given even though I have it somewhat more under control, yet I get hit by quite often at nights (and days) the clearer it becomes and the more the symptoms show the direction that it takes.
On top of that it certainly does not help to know that male (if they have it at all) patients are a risk factor by itself...and it is true, the ones I have gotten to know (few ones) are much more affected than most of the majority of the women. (at least thats true for Germany support groups.
Posted 17 May 2008 - 11:13 AM
I don't have any actual help for you since I am still undiagnosed officially, but I wanted to let you know that you are not alone.
I have a similar situation. I have slight Raynaud's but not pronounced. I am getting all the other types of problems you mentioned. I'm also trying to see a specialist because it is such a strange puzzle to put together.
I tried ignoring the symptoms and decided I wasn't going to do anything about them for a year and a half. Ignoring them didn't make the problems go away, and now I'm going ahead and trying to figure out what is happening. I still get angry at the health care system, even here in the US we have to fight to get seen by the appropriate doctor depending on insurance.
Posted 18 May 2008 - 12:02 PM
well here in Germany its less an insurance problem (most people have normal compulsory healt insurance - at least those with normal income...better earners can choose to go private which is the upper class medicine here...which serves you without 4 month wait time in such cases)....
Anyway it is more a problem that you have to get referred to a rheumatologist by your general phisician....but he statistically in Germany sees 2 scleroderma patients (all types) in his work life....and now imagine how willing he is to send you to an rheumatology expert (as this costs money from his budget if he does) if you see signs that he doesn't yet in early stages (and then he remembers his universitiy scripts where it shows pictures of a full blown scleroderma patient that you would never have like this after even a year and then try to convince him to give you that referral without him calling you a hypochondriac...). And almost the same happens with the general rheumatologist who probably sees about 10 such patients in his worklife....
I have recently read an interesting article in the University Clinic of Munich (1.5 Million people, great university reputation, third biggest city of Germany serving the whole of Bavaria, 11 Million people or one eighth of Germany's population).
And that article dealt with another very rare disease that is treated in the rheumatology department and interestingly it had exactly the same prevalence and occurrence of cases like scleroderma. That article said that in a general specialized university clinic like the one in Munich they would see about 10 such cases in a decade. Now that means 1 per year on average, and how many doctors do they have there? Yes about 10. So each sees such a case (especially the ones with early symptoms) once in 10 years. Knowing how special and different those diseases present that means they have little experience even in such a specialised clinic. What you would need is competence centers and doctors, that immediately refer you there with the slightest suspicion so that they finally also would get concentrated early data to improve diagnostic and early recognition, instead of distributed hesitant ignorance over years. With that attitude they will never have enough data to fight the onset of the disease or find commonalities. However a specialised competence center could learn and gain experience over time even in diagnosis and could nicely do statistics etc.
Something a bit like the John Hopkins in the US, but we have got a European center in Rheinfelden now (Switzerland). However due to being in Europe, this is a different country and health insurance doesn't cover out of country treatment and as Switzerland (not even part of the EU despite sitting in the middle of it) is a different country, it doesn't help. So why call it European Center? It is a pure Swiss Center serving the Swiss people (which are a few million only). So its not even the language barrier in that case and not having borders in the EU also doesn't help in that case (and it wouldn't even for other EU countries as the insurance would still not cover it.).