Pain during dialysis

[Imrazor]

My fiancee is reporting something that seems unusual. Not only does she experience severe pain during the initial prick of the needle, but also for the entire 3 hour duration of her dialysis session. It's not just a little discomfort, but severe pain. After the last time she got stuck, she cried for an hour after she got home. That's very unusual for her; she's a tough girl from the Bronx and doesn't like people seeing her at a disadvantage.

I mentioned this in another thread and got some suggestions for topical anesthetic cream as well as some numbing/freezing spray. She tried some EMLA, and it did nothing for her. The "buttonhole technique" was also mentioned, but it seems that will take several weeks to take effect. A nurse at the clinic mentioned possibly using Benadryl to knock her out during the procedure.

So is this much pain *during* dialysis normal? Are any of the tips above likely to relieve her pain given that it's not just from the initial prick? Any other suggestions?

[Charlie B53]

Some people are far more sensitive to perceived pain than others.  She may be very sensitive besides being somewhat needle-phobic.

While not personally a big fan of benadril, it does have many uses.  I would prefer she ask her Primary Care Physician for a referral to a Pain Specialist as she needs someone far more versed in dealing with sensitive persons.  I also am not a fan of any of the opiod based medications, they merely drug a person into such a drunken state they no longer care what level of pain is perceived. I have been prescribed fentenyal patches which worked very well to reduce my pain without any of the negative side effects, the fuzziness, the constipation which are commonly associated with narcotics.  Recently I have been switched from fentenyal to methadone and I am very glad to report that it works equally well without those terrible side effects.
 
I hope she can see a Pain Specialist and soon find something that will work equally well for her. Anxiety may also be contributing to her sensitivity, the Pain Specialist will figure it out.

I am waiting for a surgery date to have an access placed in my arm.  Someday it will develop and then I will be where she is right now.  Scared, afraid, and very sensitive to having those needles placed three times every week.  I will definitely be seeing my Pain Specialist hoping for something that may help with the anxiety that I expect to have.

[cassandra]

I'm sorry your fiance is in so much pain with the needling and during D Imrazor. I would think the best way is to keep using the Emla cream, or the Xylocain spray (same ingredients but less hassle)

Even though it can take for buttonholes to be established between 10 to 12 days or so, it really makes a huge difference.
The sharps might be touching the vessel wall or something which can cause the pain during D. With the blunt needles that would be a lot less painful.

it is also possible that there's a cluster of nerve endings near certain places in/on the fistula which can be seen on an ultra sound scan to be able to avoid those areas.

A combination of Emla cream/spray and freezing spray works even better (I used to do that when I was in clinic when I wanted to treat myself)

Wishing you and your fiance love, luck and strength, Cas

[Simon Dog]

Pain during dialysis is not normal.  She should keep pressuring her medical team for help until the issue is understood and resolved.

Also, some treatment for needle phobia may be in order.  I remember staring at the needle pack with terror dreading the tech coming over when I went in for my first treatment via fistua.   Since that time, I've canulated myself about 1000 times.  I  started out sitting with the needle for a few minutes working up the nerve - now I get right at it since the sooner on the sooner I get off.

[Michael Murphy]

 The pain on the stick is a problem for that improves with time every time you are stick the area is less likely to hurt.  So over time this problem will become better not go away but occur less frequently.  The pain for the session is a entirely differsnt problem.  If we're talking a dull ache its probably the pressure of the returning blood lowering pump speed will help this but make her session longer, the other common problem is when a fistula is new the needles have a tendency to stick the other wall of her fistula, this can be felt with by better needle placement.  The pain problem is one that gets better over time, but her nephrologist should work out what's causing the pain and provide relief, if he or she ignores this find a better nephrologist good luck.  One last thing is the way button holes are created is by sticking over and over in the same spots given repetitive nature it tends to deaden the pain.  The center will try to discourage button holes since the same person needs to stick you to create the button hole.  On these matters don't lie there and indure but bitch, especially to your doctor.

Modified Berger to make better.

[Charlie B53]

I was wondering this morning on the way in here, how anxiety medications work?   I don't recall ever using any so I have no idea what they are, how they work, IF, they work.  For me at least it isn't so much the pain of the needle stick but the 'thought'  a needle sticking in me, and staying there.  Simple injections are one thing, I know that is a momentary poke and then it's out of me.  Getting an IV placed is a whole different thing.  My veins shrink up and hide. It seems like when a needle touches the shrunken hardened vessel no matter how sharp it is the vein rolls off to one side or another, the needle can't ' poke' in.  Many times' it takes at least to 'poke's, by two, sometimes three different techs/Nurses, before they succeed in getting. With so many holes in me while I sit there frozen in fear, it only adds to the growing fear of needles.  And these are only size 22's, no where near as large as Dialysis needles!  I don't just 'think', I am SURE that drugs are needed!  At least for me.

[justagirl2325]

There was a time when my husband had so much pain during dialysis he had to be given morphine just to be able to get through it.  His neph put a stop to that after a few sessions like that and begrudgingly prescribed some pain pills for him to take during dialysis.  The pain seemed to subside on it's own after a month or so, it seemed to be an issue when he first started having to use is fistula (even though it had matured a year before serious use).

[smartcookie]

If her nephrologist will not prescribe pain pills what about a Xanax or valium to take before treatment?  It would ease the anxiety and her relax her during treatment.  Might even make her fall asleep.  I hate to hear this.  I have had a couple of patients experience pain like this and unfortunately they all had to learn to live with it.  Have her try to different PCTs stick her.  Maybe one can stick her where she does not hurt. 

[LorinnPKD]

You said your fiancee recently started dialysis.  How recently?

Dialysis was painful for me, too, at first!  Every time we went to a larger needle/flow rate (in my case, it took me 3+ months to go up two sizes), I was in a LOT of pain.  For me, it felt like someone GRIPPING my arm as hard as they could, ceaselessly, endlessly, and it would get worse as the session went on.  Is that what hers is like?

Some of the nurses/techs had no idea but I kept asking and found out: This was due to the pressure on the veins.  Higher flow rate = more pressure, at least until my veins got used to it.

It was sometimes eyewateringly painful!

Eventually, my veins stretched out enough that it didn't hurt anymore. I would just ask for some tylenol when I was put on (or when it started to hurt) and within 20 mins or so it was manageable.  But my last move to my largest needle took me about a month to adjust, so the nurses would just come 'round with the Tylenol until I didn't need it anymore.

[Imrazor]

Her pain is more localized to where the needle is. The pain is more an intense ache than a sharp pain.

Got some good news today. Even though her nephrologist wasn't willing to prescribe any pain meds, her surgeon prescribed some Percocet for her. I'm hoping that will either dull the pain, or just plain knock her out. We'll find out Wednesday.

Right now she's dialyzing half-way through the catheter and half-way through the fistula. According to the surgeon the catheter is only flowing one way, so they will have to pull blood out through the catheter and put it back in through the needle - or maybe vice versa. The catheters have been a major problem for her, constantly clogging up and requiring replacement. She's had four catheters installed so far.

So I'm hoping that the Percocet will relieve her pain and is only a temporary necessity. Thanks for all of the advice.

[Michael Murphy]

If it's a ache instead of a sharp pain ask to have the pump speed lowered for a while, this will increase her time but as the fistula grows it will be able to handle higher pump speeds and her time can be shortened.

[LorinnPKD]

Oh that's right, Michael Murphy!  They also lowered the speed 25-50 for me...

[PrimeTimer]

My husband had pain in the beginning. We found that gently laying a heated rice bag alongside his fistula arm helped the pain. I made rice bags from his old tube/crew socks. I put a little uncooked white rice into a tube or crew sock, tied a knot at the end and put it in a microwave next to a small bowl of water (to create moist heat) and heat them up for about 1-2 minutes. Sometimes I added scented essential oil to the rice that would let off a nice scent when heated. The rice bags stay warm fairly long. I made one to put along side his arm and a small one just to hold in his hand. By the way, that's another thing...I always slid a large soft oven mitt over his hand that is on the arm with the pain. For some reason, the warmth helped. Maybe the clinic would let her heat up rice bags just before her treatment or a heating pad otherwise, heat them up at home and keep them wrapped up in something warm until use.

[Riki]

If it's a ache instead of a sharp pain ask to have the pump speed lowered for a while, this will increase her time but as the fistula grows it will be able to handle higher pump speeds and her time can be shortened.

Where are you at where they will increase your time if they lower the pump speed?  I asked to have my time increased because I thought it would help with my low bp issues, and got a definite and resounding NO.

As for the pain in the fistula, since it's new, what it could be is that the vessel is getting "tired" and can only be used for so long.  Perhaps they should only do half or 3/4 of the treatment with the fistula and finish off with the line, until the fistula gets used to being stuck.  After 7 years, my fistula still spasms sometimes for a few minutes after being stuck, but if the pump speed is left low for 20 minutes or so, it will calm down and they can bump the speeds up.  Also, if you're not doing buttonholes, don't let them stick the same spot every time.  Moving the needles around (if not using buttonholes) helps to prevent the pseudo aynurisms (sp?) or the large bumps that can develop on your arm over time (I currently have 3 of them).  Trying new sites as the fistula develops also gives you more options.  I have 5 sites now that I can use, so if one should infiltrate, there are still 4 more than can be used, so I don't necessarily have to miss a session.  Another thing, and it's been mentioned, sometimes even if the flow pressures are good, the fistula can still be sore because the needle is just barely touching the wall.  What works for me is, if I'm getting pain, is to pull the needle back out, so that it's not quite in all the way (you can still see some of the silver of the needle next to the wings).  That seems to help for me.  Her fistula is new and will continue to develop with use.  After a while, the pain will stop as well.

[Imrazor]

I just wanted to post a follow-up to this, in case anyone else might experience pain like this. My fiancee mostly resolved this problem by having her surgeon prescribe some Percocet for the pain *during* dialysis. For the initial prick, she found the freezing spray to be most helpful. The EMLA cream helps, but only a little bit, even though she slathers it on generously. She reports that the pain during treatment is improving slightly, but she still feels the pain through the Percocet.

Thanks for all the great suggestions...

[smartcookie]

I am so glad she has gotten some relief!  I hope it continues to improve until she feels nothing! 







sp mod Cas

[PrimeTimer]

Glad she is doing better. Maybe right now the needle(s) are too close to some nerves but as the fistula matures and "fattens" and stretches the pain will lessen. I hate that our loved ones have to go through this! Nobody deserves that pain! Nobody! Stay strong and continue being supportive of her. Sounds like you are doing a good job at that. 

[Michael Murphy]

When I started 4 years ago the pain from sticking wasn't so bad, I am one of the maniacs that has dental work done with out Novocain.  But the needles would occasionally start hitting the other side of the fistula.but the worse pain I ever felt was when I was in the hospital and they rolled my bed to dialysis. The chairs it seems have a important function you can't  roll over.  But roll over I did and the lower needle flipped.  It started aimed down and ended up.  The pain was unbelievable .