Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Hand Vein Pain?

hand vein pain burning pain in hand phlebitis swollen veins

  • Please log in to reply
16 replies to this topic

#1 msjess

msjess

    Senior Bronze Member

  • Members
  • PipPipPip
  • 36 posts
  • Location:Maine

Posted 21 July 2013 - 03:42 PM

I'm sitting here kind of freaking because I am having intense burning pain in my left hand. It appears like the vein on the side of my finger into my palm is swollen, and that is right where the pain is coming from. I am wondering if this type of burning "vein" pain is part of scleroderma or not? My imagination is running wild that I am having a stroke, and the anxiety is going to keep me up all night. :(

 

The pain is hot, almost like a stabbing pain, and it's right there in the vein. I also have it sporadically in the tips of my fingers and bottom of my feet. All of my veins in my hands for the past month have seemed to be getting more and more swollen (along with finger joint pains and phlebitis in my right leg).

 

Thanks for reading and for any advice.



#2 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 22 July 2013 - 08:19 AM

Hi Msjess,

 

I'm really sorry that you're feeling so anxious; I do understand how worrying it is to have unexplained symptoms which your mind chases round and round and uncertainty is one of the worse feelings.  I also understand how easy it is to search on google for symptoms and then worry yourself sick (been there, done that!! ;))

 

Please note I have no actual medical training, but although a burning sensation in your fingers can be attributed to Scleroderma (I experienced dreadful burning and tingling in my fingers which were very swollen with Carpal Tunnel Syndrome before I was diagnosed with Scleroderma) it could also be a symptom of other health problems. I think you said on your other thread that you don't have an appointment with a rheumatologist until October? Would it be possible for you to see your doctor with a view to bringing forward the appointment so you could see him a little sooner, if only to discuss your symptoms to help put your mind at rest?

 

Kind regards,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#3 msjess

msjess

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 36 posts
  • Location:Maine

Posted 22 July 2013 - 12:38 PM

Hi Jo, thanks for responding. I made an appointment with my primary again, as she wanted to see me in 2 weeks. The pain is a bit better today, but when it hits it's so sharp and burning. I saw an article on Hopkins Medicine Magazine about scleroderma and in it they describe the pain of scleroderma "feels like hot cement coursing through their veins," and honestly that is what this feels like. The vein is swollen and it feels hot, burning, sharp, and then almost numb, like I've got poison in there.

 

Interestingly, I emailed a cousin of mine who I haven't spoken to in years this morning. She had Raynaud's when we were growing up too. And I asked her if she'd ever been through the rheumatology process. In fact, she had been, and she has been diagnosed with CREST Scleroderma. This is a cousin, who also is directly related to the grandmother (my dad's mom) who  I believe had undiagnosed scleroderma. My mom remembered also that my grandmother, when hospitalized after having a stroke, had to have "bars" put into her hands so they wouldn't tighten up too much. I think she said they were towels wrapped tight and put in my grandmother's hands. This would go along with her having sclerodactyly.



#4 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 23 July 2013 - 01:18 PM

Hi Jess,

 

I'm concerned about your new vein problems. Do you think they could be related to the phlebitis in any way?  I don't get swollen veins with Raynaud's and the pain is fairly predictable during attacks, and also very obvious because there is a color change along with any pain or numbness and it subsides as soon as the attack is over.  So if it were me, I would not assume it was Raynaud's that you are experiencing at the moment.

 

Although I have no medical training at all, I particularly don't like the sound of "vein swelling" as that does *not* happen in Raynaud's and it could be due to a blood clot.  If your symptoms are compatible with a blood clot, you should be seen somewhere right away.  To be on the safe side, you could double-check this by calling your local emergency room and discussing your precise symptoms with a triage nurse. They will let you know if you need to be seen urgently for this, or whether it can safely wait until your upcoming doctors appointment.

 

I am sorry your cousin also has scleroderma. What a surprise that must have been for both of you!

 

I don't have any idea if this is pertinent, or not, regarding your grandmother, but having a stroke can cause a condition often referred to as "claw hands". You can google "stroke and claw hand" for more info.  In this situation, the hands become clawed due to muscle paralysis rather than fibrosis.  Of course, it is also possible for people to have scleroderma and have a stroke; they are not mutually exclusive items.

 

Although it is rare for scleroderma to run in the family, it can happen. It is known to be hereditary in the Choctaw tribe in Oklahoma. See Causes of Scleroderma: DNA, Race and Genetics.  It is much more common for autoimmune symptoms or diseases in general to cluster in families, such as for a cousin to have lupus, a mother to have scleroderma, a sibling to have only Raynaud's and positive antibodies, and an uncle to have rheumatoid arthritis.

 

Please keep us in the loop as to how things are going for you.  I hope that things settle down for you soon and become more manageable on a day to day basis.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
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.

#5 msjess

msjess

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 36 posts
  • Location:Maine

Posted 23 July 2013 - 03:11 PM

Shelley, I have considered that this may be related to the phlebitis. I really have. I also feel like it may be a septic arthritis of some type. It's scary how many different things it could be.

 

The pain is intermittent today, like a burning shock in a toe or my finger, and then there is all-the-time pain in the joints that feels like they are swollen and infected... like the blood is wrong or poisoned. I have this bad feeling that all of this recent stuff is directly related to my IV Iron Dextran infusion (May 23rd), as the weeks of burning/itching pain started immediately afterwards, then the phlebitis and joint pain.

 

I do know the second week-long course of prednisone did nothing to help it, and I am in worse shape today than yesterday. If I could get an accurate photo of what was happening, I could share it perhaps. I guess looking at my hands right at this moment I can see swollen veins in every finger that was NOT there just over a month ago. The tips of all fingers hurt, like pins sticking in them, or perhaps when I touch something there is broken glass in there. The joints are hot, red and swollen around the blue veins.

 

There is no real rash, but I do have random small spots of skin where it feels hard under the skin, and other spots that look like tiny skin-colored round blisters. The joints in every finger aches, and the big pad of flesh at the base of my thumbs also ache. Feet hurt but not as much as the hands now. I also am getting weak in my hands. I can't hold a book for longer than a few minutes to read and sitting here typing is extremely difficult.

 

If anybody has ever experienced anything like this I would be grateful for some advice. As I've said before rheumatology won't see me until Oct. 10th, my primary really knows nothing about any of this (she shrugged her shoulders and then offered an xray to check for arthritis and then did a lyme screen per my request), and dermatology said I need rheumatology.

 

Also, vascular said that circulation issues don't happen with people my age, and she just basically checked my pulse in my wrists and ankles, then said nothing more beyond suggesting it could be a neuropathy related to carpal tunnel?

 

Hematology as well said they didn't believe that the problems I am having are related to my IV Iron infusion but that I need rheumatology. I feel like the only way I can get someone to take me seriously is to go to the ER but even they may think I am just wacky for coming to the ER for something that primary care should be able to help me with...



#6 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 23 July 2013 - 08:42 PM

Hi Jess,

 

You don't necessarily need to go to the ER, but rather call your local ER and specifically ask to speak to the "triage nurse" (pronounced tree-ozh). Tell them you need advice because you don't know if you need to be seen or not.  Have a written list of your situation before you and refrain from becoming emotional so that the nurse responds to the medical facts and doesn't get distracted trying to calm you down emotionally.

 

Another possible resource is that most insurance companies have help line nurses that will provide advice, help you troubleshoot difficult issues, recommend what type of care you need, and if needed they will often even fax over a referral to your ER.

 

I have found both insurance help lines and triage nurses absolutely invaluable at various times. Just remember with all medical professionals to do your very best to stay cool, calm and collected so that they stay focused on the medical facts. 

 

I don't know if this has happened to you, but I've found that it is way too easy/normal/natural to become upset when we are ill and undiagnosed, and unfortunately that often ruins the whole appointment as it devolves into them trying to quell our anxiety rather than diagnose and treat our ailments.

 

You don't have anything to lose by calling for more info, however if it is something serious that is going untreated, you may have something to lose by not getting it looked at right now.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
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.

#7 msjess

msjess

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 36 posts
  • Location:Maine

Posted 27 July 2013 - 03:12 PM

Thank you Shelley. I ended up waiting and saw my primary doctor Thursday. She's urging me to try for disability and gave me medication for the joint pain; it is the generic of Arthrotec, which is diclofenac and misoprostol.

 

The pain keeps changing or, rather, snowballing. It started only with the itching, then burning, then the joint pain kicked in, then the "vein" pain as I believe it to be, and now it is including pain in the fingertips, almost feeling as if the fingernails are being tugged on or pulled. My primary said she didn't think the vein pain was related to the phlebitis, but she is also not very knowledgeable about rheumatology/connective tissue stuff either.

 

Right now, a day after starting the joint pain med, I do think it was somewhat helpful but right at this moment my right pointer knuckle joint has a very deep ache and I am constantly feeling that odd sensation in the ends of my fingers. The only way I can describe it is that someone is trying to lift on my fingernails, relatively gently, but still it feels strange. My doctor also is running a complete blood count (CBC) with and without differential (not sure what the difference is there) and is telling me I should wait and see the local rheumatologist in October before seeking help in Boston. She said Medicaid will be more likely to pay for a specialist once we've exhausted local options for doctors.

 

Lastly I have again been feeling a weighty feeling in my chest, almost as if I can't take a deep enough breath. Last year I had it all summer, and began the summer also with pleuritis. Although it's been a bit of an anxiety-inducing addition to my symptoms, I am trying to keep my cool and wait it out, see if it's being aggravated in general by anxiety. I am trying not to worry too much about pulmonary embolism or the possibility of it, but I imagine my breathing symptoms would be worse if it was at that point.

 

Truly appreciate your advice and direction here. It helps even to think that someone is reading or offering support.



#8 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 29 July 2013 - 01:55 PM

Hi Jess,

 

Thank you for the update.

 

If your doctor is encouraging you to apply for disability, you should start the process immediately, as in, this very day, because it can take months and sometimes years for the process to unfold, and every day you wait can affect the start date of your benefits.  It is not an easy process at all but if your doctor encouraged it, they are hopefully also documenting your ailments. We have a lot of threads on here about disability applications.

 

I am assuming that you mentioned your chest discomfort to your doctor.  Did they give any indication of what it could be?

 

If you didn't get around to mentioning it, it is not up to you to decide whether or not your symptoms are due to a pulmonary embolism (of course); that question should only be answered by a medical professional.  Like perhaps the triage nurse or your insurance helpline nurse.  They can review a checklist of symptoms with you and let you know whether or not you need to be seen immediately or what steps to take next. (I'm sure you know all this, but we have to keep on mentioning some things for the sake of newbies who often stumble across individual messages out of context.)

 

Like you, I do hope it is "only" anxiety but if it turns out you are having enough anxiety that it is causing such disruptive symptoms, it would need to be diagnosed and treated.  It is not in the least bit unusual for people going through a difficult diagnosis to suffer emotionally over it.  That is why we have a section of our website devoted just to Emotional Adjustment and Scleroderma.

 

But, it is not okay to just assume it is due to anxiety, when you have other health issues going on, which may be the culprit. So please do make sure that your chest discomfort is evaluated from the ground up.  And please do not let anxiety -- or any other excuse of any kind -- stand in your way of applying for disability benefits.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
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.

#9 paulf

paulf

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 18 June 2014 - 02:45 PM

Hi Jess,

 

Did you ever find out what was causing your hand vein issues? I'm dealing with something very similar with blue roadmap like veins on palms of hands as well as swollen and sore veins going up both index fingers. I've been fighting Lyme and co-infections for many years and I don't know if it's just another symptom manifestation or not. It's been going on about 6 months now and it totally freaks me out because it's so unnatural. If you learned anything new over what was causing yours or how you dealt with it I'd really love to know.

 

Thanks.

 

Paul



#10 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 19 June 2014 - 03:59 PM

Paul, welcome to Sclero Forums.  Have you been seen your doctor about this, or been referred to a vascular clinic yet?

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
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.

#11 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 20 June 2014 - 06:19 AM

Hi Paul,

 

Welcome to these forums!

 

I'm sorry to hear that you've had ongoing issues with your hands and veins and would echo Shelley's suggestion that perhaps you should be referred to a vascular clinic.

 

Kind regards,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#12 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 23 June 2014 - 08:38 AM

Hi Paul,

 

Please excuse me for chiming in again. Please keep in mind that I am not a doctor and have no medical training at all; this is just my understanding.

 

I don't know if we covered this in this thread or not, but generally speaking blue veins and prominent veins by themselves are not a health problem. Veins can (and often do) change appearance, such as becoming more prominent or swollen or blue and still be normal.

 

It's when the skin turns intermittently white or blue, such as on the fingers or toes, which may or may not be accompanied by pain during attacks, that indicates possible Raynaud's. See What is Raynaud's?

 

What strikes me as abnormal about your description though is that you report that your veins, specifically, are painful (and enlarged and blue). Vein pain might be caused by poor circulation, cellulitis, a blood clot, etc.  So altogether this is not anything to ignore or tolerate and needs to be evaluated by a doctor..

 

Please keep in touch and let us know what you find out.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
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.

#13 msjess

msjess

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 36 posts
  • Location:Maine

Posted 30 June 2014 - 03:28 PM

Hi Jess,

 

Did you ever find out what was causing your hand vein issues? I'm dealing with something very similar with blue roadmap like veins on palms of hands as well as swollen and sore veins going up both index fingers. I've been fighting Lyme and co-infections for many years and I don't know if it's just another symptom manifestation or not. It's been going on about 6 months now and it totally freaks me out because it's so unnatural. If you learned anything new over what was causing yours or how you dealt with it I'd really love to know.

 

Thanks.

 

Paul

 

Paul, I really haven't learned anything new. I do know heat is related to my burning pain and I think it may be related to the Raynaud's in some way. I haven't gotten it yet as much this summer, but it sneaks up occassionally and is more of a twinge than the full-on burning I felt at the time I started this post. Also, I have a feeling that the Iron Infed infusion that I received early that summer had somehow "caused" this to snowball on me.... perhaps it triggered something in my immunity to overreact or maybe I had a bad reaction? Either way I won't be getting another iron infusion any time soon. So sorry you have been feeling this pain. I do know that Lyme disease can cause many pains similar to this perhaps yours is related to that Lyme? I was tested for Lyme when this first came up for me. Good luck.



#14 paulf

paulf

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 19 October 2014 - 09:25 PM

Thanks everyone for the responses. I'm still dealing with this issue and in fact it has gotten worse in terms of how my veins look on the backs of my hands. Vascular doctor was no help. I'm now trying to find a rheumatologist. Still not sure if this is an autoimmune issue or something related to my Bartonella.



#15 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 19 October 2014 - 10:32 PM

Hi Paul,

 

I'm sorry to hear that your vascular doctor was unable to help you and I've included a link to our page on finding a Scleroderma specialist, which I hope you'll find useful.

 

Kind regards,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#16 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 20 October 2014 - 04:00 AM

Hello Jess

 

I wonder if burning pain, especially in my feet, is because of Raynaud's even though I have to mildly with no colour changes. I have a friend who has cried because of a Raynaud's attack being so painful. I need to be more mindful of when it happens, I also get it in my legs but that can't be Raynaud's surely? It's not erythromelalgia either, had that and it brings heat with it as in you could fry an egg from the heat coming off my legs!

 

So many things happen to us that we might as well blindfold ourselves and pin the tail on any symptom/cause!

 

Take care.


Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#17 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 20 October 2014 - 04:03 AM

Hello Paul

 

Welcome to the forums and I hope you find some answer, it's so frustrating when we don't know what's causing our symptoms. Of course if we knew the cause we could then look at the treatment, if not cure.

 

Take care.


Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)