My arm hurts

[MooseMom]

I've had my fistula for almost three weeks now, and I am still experiencing a lot of discomfort.  I don't know if it is normal.  I've had the fistula checked by my surgeon, my neph and the neph's assistant, and they all say that it is in excellent condition.  However, I am still having to take Tylenol every day for pain.  The scar itself begins at the crook of my elbow and radiates downward 2 1/4 inches, pointed toward the left side of my arm when it is turned over palm upwards.  As the day wears on, the area near my wrist begins hurting in a neuralgia sort of way; the surgeon says this is normal and can take up to 6 months to disappear.  When I wear a long sleeved shirt, it hurts more, and I can't wear a watch on my left wrist; anything that touches my left arm seems to spark irritation.

I honestly didn't expect this much discomfort for so long; is this normal?  As devastated and frightened as I was by the idea of finally having to have a fistula created, I didn't think it would hurt this much, and I certainly didn't expect to have to still be taking painkillers three weeks after the procedure.  When I asked IHD members about their own fistulas, no one seemed to make that big of a deal of it, so I can't understand why mine is bothering me so much.  Any ideas?  Anyone have these same concerns?

[jennyc]

Mine still hurts off and not, nothing huge though. Normally when i'm a little overloaded it hurts, the more fluid on board the more it hurts though

[RichardMEL]

The only time I've ever felt pain in my fistula(almost had it six years) is when someone's jamming a needle into it. Other times it doesn't bother me at all. I'm interested in Jenny's comment about the fluid affecting things - I've never felt that, but then again I've noticed that extra fluid tends to hang around my waist(that's where I notice it anyway) and sometimes my ankles not my wrists.

[BASSMAN]

Mine is at the wrist.  I felt and still feel what I call growing pains.  At least that is what I think it is.  I have been assured mine is excellent by several doctors and nurses.  I have a bump at the site where they joined the vein and artery.  The rest of it has grown quite a bit all the way up my arm but is not real visible but you can certainly press on it ans realize how big it has gotten.  I cannot believe that anyone would have a problem sticking it.  I have slight pain on occasion along the lentgh of the fistula and I swear I am just feeling it grow.

Weird,  that's my opinion anyways.

[MooseMom]

I can understand how fistulas at different locations along the arm might give off different sensations, but I get different sensations in different parts of my arm even though the fistula itself is only 2 inches in length.  I can definitely feel the "bump"; if I am talking on the phone and am holding the phone in my left hand, it hurts to bend my left elbow because the fistula gets in the way.  At first I thought it was just swelling, but now I realize it is the fistula itself.  Even my tricep feels sore, but the worst bit is the feelings of lightning like pain I get down by my wrist.  I know I've talked about this in an earlier post, but that was a couple of weeks ago, and I am frankly really surprised by the amount of discomfort I am feeling this long after the surgery.  I don't feel comfortable taking Tylenol every day, so I limit it to a dose in the early evening (because by then, the pain has made me really tired and cranky) and then again just before I go to bed so that I can sleep. 

I have not started D yet, and swelling is not a problem at this time, so at least in my own case, fluid is not the problem.  I'm sure it is just the surgery and the maturation of the fistula, but it's really starting to become an issue for me.  The constant discomfort (that becomes downright painful) is enervating, and I'm not sure what to do about it.  I put an ice pack on my arm, but that was so painful that I couldn't stand it.  If anyone has any ideas/thoughts, they'd be much appreciated.  Thank you.

[Tracy]

I had my fistula put in on 2/26 in my upper left arm.  My lower arm is still numb and my pinky is numb and feels prikly inside.  They said it will come back, but I dare say it is a little painful.  I can't sleep on my left side and my entire arm aches sometimes.  Kinda like I would think maybe arthritus would feel.  I just figured it goes with the territory.  I hope you arm gets to feeling better.  It is different.  Incidentally, I have decided to befriend my fistual.  I named it.  I figure her and I are going to be friends the rest of my life, so I better love it and take care of it.  I know that is weird.  oh well. 

[MooseMom]

I had my fistula put in on 2/26 in my upper left arm.  My lower arm is still numb and my pinky is numb and feels prikly inside.  They said it will come back, but I dare say it is a little painful.  I can't sleep on my left side and my entire arm aches sometimes.  Kinda like I would think maybe arthritus would feel.  I just figured it goes with the territory.  I hope you arm gets to feeling better.  It is different.  Incidentally, I have decided to befriend my fistual.  I named it.  I figure her and I are going to be friends the rest of my life, so I better love it and take care of it.  I know that is weird.  oh well.

No, that's not weird.  I've named every car I've ever owned; my father made fun of me for doing that, and he told his mechanic.  The mechanic said that cars run better when they have a name, so I said, "Nyah."  My station wagon is named Stella (Stella Station Wagon) and my Acura is named Betty White because, well, she is white.  Cars with automatic transmission are female because you don't have to tell them what to do; they just get in gear and get on with the job.  Stick shifts are male for obvious reasons.
While I'm not glad that your fistula is feeling a bit painful, it does make me feel better that what I am experiencing is not totally unheard of.  The numbness I have felt is gradually dissipating, and I'm sure yours will, too.

[Tracy]

That makes me feel so much better!  By the way, her name is Jenny!  Good Luck, Tracy

[monrein]

The sensations you describe sound quite familiar to me MM and it does take a while for the nerves to settle down.  The worst feeling for me was at night when I slept and occasionally the circulation would get cut off a bit and I'd touch my hand which was ice cold and had zero feeling in it, as if I had a dead person in bed with me.  I'd get up and squeeze my hand frantically till the feeling returned. 

For me I found it perhaps easier to deal with the "pain" from the fistula since I also had a chest catheter which bothered me more.  I also have a high tolerance for pain which isn't always a good thing since I can tend to ignore stuff that ought to be seen.

[Sluff]

Could you be using that arm too much so soon after getting your fistula? I know pain is normal but not sure to what scale. I do not have one so i can not judge one way or the other but I hope it eases some soon.

[tyefly]

My arm is still numb from the surgery.....  and its been months.....  my whole bottom arm...  well  I dont think I will get my feeling back...... I hate the whole thing  but it does work well.... hang in there 

[kitkatz]

My graft seems to hurt all of time now a little bit.  They are hitting nerves more often.

[Quickfeet]

The "steal" syndrome can cause the weird prickly feeling in your arm and hands. Also my doctor put my fistula in my elbow and said that after it matured he would move it because there are a lot of nerves in that location. I had similar pain and discomfort until mine clotted. Random sensations. It hurt to bend my arm. It hurt to lift anything more that two pounds. Plus my arm was weak, one pound felt like two. If you think it will help, i can post a picture of mine. The area around the incision still hurts to touch. its like the skin there is hypersensitive. I think mine is close to five months old. It only ever worked for the first week or two.

[sullidog]

I just had a graft and have numness around both insissions.
Troy

[Stoday]

I must be lucky. I've had no pain in my fistula since it was formed 10 months ago. The loss of sensation and pricklyness disappeared a couple of months ago.

[MooseMom]

Thankfully, the lightninglike sensations down my arm have largely disappeared, along with the numbness.  Overall, it is getting better, but I find that I still have to take Tylenol in the evenings because by then, the crook of my elbow feels sore.

I do have a question, though.  I had assumed that I'd have to exercise my fistula so that it would mature in a timely fashion.  I had researched specific exercises, and I was all ready with a plan.  But both my neph and my surgeon told me that I should just use the arm as usual and that exercises weren't necessary (although I could do some if I really wanted).  My neph actually told me to "ignore it."  Why would they tell me that?  Does it perhaps depend upon where the fistula is placed?  So, I've been just carrying on as usual...

[okarol]

I am glad to hear you're not hurting as much. I hope all the pain goes away.
Fistula First's website has info about exercising - scroll down on the page and select "Caring for & Developing Your New Fistula: What You Should Know" for the PDF file.
http://fistula.memberpath.com/Patients/PatientEducationalMaterials.aspx

[MooseMom]

OKarol, I had already looked at that site and actually had already had my clothespin at the ready.  I noticed, however, that this brochure says that exercising the fistula "may" make it mature faster, which really doesn't mean much.  Maybe people who are sicker and don't get much exercise during the normal course of the day would benefit from more specific exercises.  I still haul mulch, laundry and cast iron pans, so I guess I'm exercising it without realizing it!  I was just surprised that my docs didn't bang on more about exercising it.  I can fell the "thrill" ever moment of the day, and it's still driving me nuts.

[Tracy]

My surgeon said that I didn't need to exercise it, just normal everyday living would be ok.  So, I haven't done anything special.  It doesn't look any bigger at all, but I can feel it strong.  By the way, I have tried to befriend my fistula.  Maybe to make it seem more positive...I don't know.  Why not?

[Stoday]

  By the way, I have tried to befriend my fistula.  Maybe to make it seem more positive...I don't know.  Why not?

Same here Tracy. I think that's a good strategy even though it's a mental trick to avoid a constant reminder that you're really ill.

[MooseMom]

Mine still feels too alien for me to befriend it.  Maybe, in time.  I can relate to the "constant reminder that you're really ill" viewpoint.

[MooseMom]

OK, I'm sorry that I am rabbiting on this topic again, but last night was a very uncomfortable night for me and my fistula.  The discomfort has now been narrowed down to the fistula itself.  I can just sit here and feel the blood going through it, but it feels like it is going through it so fast and hard that the vessels are about to burst.  I know they're not, it's just that it feels that way.  It feel like the fistula is growing (which I know is the point), but that as it grows, it aches.  I had to take Tylenol twice during the night after being awakened that many times by the discomfort.  I've never experience this before, and since I know that the fistula is so vital, I just want to make sure this is normal.  The rest of my arm/hand is fine...much improved.  I still get some modicum of nerveache in my forearm, but that is much reduced.  Over all, things are better yet different.  I can tolerate more pain/discomfort if I know it is just normal and all part of the process.  So, does this sound normal to you?  Thanks so much for any advice or encouragement.

[calypso]

Sounds like growing pains, and I suppose when it's done growing it should hurt lsss, but I'm no expert I don't even have one yet, the one they put in clotted off in the recovery room right after surgery, I have to go in for another one.

Hope you feel better soon. 

[monrein]

OK, I'm sorry that I am rabbiting on this topic again, but last night was a very uncomfortable night for me and my fistula.  The discomfort has now been narrowed down to the fistula itself.  I can just sit here and feel the blood going through it, but it feels like it is going through it so fast and hard that the vessels are about to burst.  I know they're not, it's just that it feels that way.  It feel like the fistula is growing (which I know is the point), but that as it grows, it aches.  I had to take Tylenol twice during the night after being awakened that many times by the discomfort.  I've never experience this before, and since I know that the fistula is so vital, I just want to make sure this is normal.  The rest of my arm/hand is fine...much improved.  I still get some modicum of nerveache in my forearm, but that is much reduced.  Over all, things are better yet different.  I can tolerate more pain/discomfort if I know it is just normal and all part of the process.  So, does this sound normal to you?  Thanks so much for any advice or encouragement.

Sounds normal to me although when my arm used to ache, I attributed it to my being so protective of it that I would keep it stretched straight out ,maybe for too long, trying not to bend it and cut off the flow.  It was sort of an ache of fatigue.  It does feel like the blood is going hard and fast which in fact it is.  The vein is now effectively an artery and most people never experience the feeling of arterial blood flow because they're buried deep.  Venous blood flow is more passive and so we're not aware of it.  Now here's my maybe-I'm-just-plain weird disclaimer, but I really like the feel and the rushing of mine because then I know it's working and getting stronger and therefore will help to minimize any potential problems when D starts.   

[MooseMom]

I really do not think I am being too protective of it.  I was told to just carry on as usual and that's what I am doing.  I'm sure I will soon become much more comfortable with the thrill, but right now, it is just achy and uncomfortable.  It just hurts!  I guess I should be grateful that it seems to be working and not clotted off like yours, Calypso.  OK, well, I won't blather on about it anymore.  I'm sure it's all OK and that I just have to grin and bear it for awhile and keep telling myself that this is what is supposed to be happening.