Those in Pain Management

[crystalina0814]

It has been quite awhile since I have posted here. Last fall I took the advice of my Rheumatologist and saw a pain management specialist. I am in constant pain. I wake and my joints burn, my muscles hurt across my chest and back- IBprofin just did not cut it anymore, I was taking more Prenisone than ever, and I had given Plaquenil over a year to work it's wonders on me! I needed pain relief just to live my life!
Anyways, the pain specialist (bless his heart, had no clue who/what he was taking on!) placed me on Roxicodone 130mgs 3x a day and 1Percocet 10mgs 4x a day for breakthrough pain. In addition to this, he gave me 4 Hydromorphone injections to shoot in my butt muscle for really bad pain. This was more than enough and worked. When I go on ABX my pain skyrockets to uncontrollable. The shots were miracles for this....but with only 4, I would only get 4 days of relief a month.
When I get sick or go on abx, I also start to vomit (from coughing....mucus). I take phenegran 25mgs for this...but that seemed to stop working. I was throwing up more of my pills than keeping down and wasn't getting much relief. So....they took away the pills AND shots and put me on 25mcg Fentanyl Patch.
Have any of you been on this??
I have for two weeks now with NO relief whatsoever. My pain is back to where it was before I started PM. I *Think I am not absporbing the meds because of my over the top salty skin. When I pull off a patch after three days...I swear it is covered in what looks like salt. I hurt. I have called and the security guards (nurses) won't get me an appt. sooner than my next on July 29th. That is 2 weeks away. The doctor's are fabulous, the nurses act like everyone is there to take advantage.
I just want pain relief. I want to know what you other CFers get/do in your pain management routine. Have any of you had these issues? What works? What doesn't? I want opinions. If you are going to judge me for being in PM or for taking narcotics...leave it at the door. I know my own body and my lungs have improved since managing my pain. I can handle more treatments and exercise....before I couldn't nearly as much.

 

[beautifulsoul]

Christina-
My situation is far off from yours but I'll still let you know what I've been doing with my personal routine. I have really bad back & leg MUSCLE pain. Sometimes spasms. I see pain management for it. I'm currently taking a muscle relaxer twice a day. (xanaflex also known as "Tizanidine" 2mg) I know it also comes in a 4mg pill. I haven't used the Lidoderm 5% Patch for a month. Only because my insurance needed a prior authorization from the Dr. They finally approved it but I haven't been back to see the doctor yet (my next appointment is Aug 2nd) He will not write me another script until I see him again. The back patch is 12hours on and 12hours off. I wear it at night since I'm in the most pain the morning. It doesn't take the pain completely away. It only makes it so the pain isn't AS bad. Due to my transplants I can not have anything with NSAIDS. Which basically leaves me with Acetaminophen (Tylenol) If my pain is really bad the effect isn't strong enough. I have leftover Tylenol #3 from a procedure a few months ago so I've been taking that only when I feel like I absolutely have to. I'm going to tell the doctor at my next appointment that I need something stronger for the pain. I do like the muscle relaxer. That works for me. They are pretty strict with narcotics here. I have to be careful anyway with my transplants...

Sorry I couldn't be much help. Hopefully some others can add further info & advice.

 

[moxie1]

Can't help you with the pain management, but I did want to chime in about the vomiting/nausea.
I always get sick when in the hospital on IVs. Phenegan (sp?) used to work for me, but doesn't do a thing anymore. Zofran is what is given to me now and it works great.
Strangely, I can have the same IVs at home and don't get sick at all.....it must be my dislike of the hospital that sets me off.

 

[beautifulsoul]

Originally posted by: moxie1

Can't help you with the pain management, but I did want to chime in about the vomiting/nausea.


I always get sick when in the hospital on IVs.  Phenegan (sp?) used to work for me, but doesn't do a thing anymore.  Zofran is what is given to me now and it works great. 



I love Zofran. I take that as well

 

[imported_Momto2]

Christina, first of all, hugs to you. Chronic pain is horrid. I had ribs that kept breaking every couple of months for close to ten years (not yoru level of pain, but it was pretty bad when I was coughing constantly and the ribs kpet grinding together). Thankfully hydrocodone, oxycontin, and morphine all worked well for me. I too start vomiting when I have a lot of mucus and am coughing a lot. The only thing that helped was this herbal tea a trained herbalist gave me. Regarding the patch- my experience has NOT been good with patches. I had one not work at all and the other almost killed me. I wish I could remember what those patches were so I could be of more help. I did try alternative medicine (acupuncture, cranial work, reiki) and I think it helped a little, but was very temporary. And btw, anyone who hasnt been in chronic level 8-10 pain should ever bash narcotics. Those few hours of occasional relief kept me going during a very dark time. Blessings to you, I hope you find something that works very soon!!!!!! (I have two kiddos too)

 

[beautifulsoul]

I forgot to mention my doctor suggested getting back massages. I never looked into it. I get huge "knots" or lumps that are very painful in my back. I don't have the money to get a back massage even once a week. Taking 15 minute walks does help if It's often enough (usually at least 3-4 days a week for me)

Sara- you are such a strong woman!

♥

 

[crystalina0814]

Thank you everyone for your advice!
I called yesterday (Friday) and begged for some help/relief. They did see me and I got on the Zofran for my nausea and they adjusted my meds. Ahhhh, sweet relief.
Sara- Wow, thank you for sharing your story with me. I do agree, I have always been one to steer clear of pain meds....but when you need them to live, that is a whole different story. I hope your pain is under control now, too.

 

[beautifulsoul]

Christina, I'm glad you were able to receive some help from the doctor (and us )

Hugs to you...

 

[imported_Momto2]

Thats great crystalina that things are getting under control. I am doing fine now, havent broken anything in 2.5 years now thanks to a lot of health changes that I made. But I do remember how hard it was, I hope your path continues to get easier for you too!

Beautifulsoul- gotta love massages!!!!! .....and thanks for the kind words : )

 

[JustDucky]

I too have chronic pain and am on pain management. I have Ehlers-Danlos syndrome III which causes my joints to dislocate easily and unfortunately, causes chronic pain. I also have lung pain from coughing, all of this gets exponentially worse whenever I am ill. I am on the Fentanyl patch, but 100 mcg/hr and it is changed every 2 days versus every 3 days.. I am one of those people who never makes it to the 3rd day, the pain is back by the end of the 2nd. My docs think it is because I have a constant low grade temp so I absorb it quicker. Just a theory though.

It sounds like you might need to be titrated upwards. You were on a fair amount of pain meds before they put you on the patch, I just think that they need to gradually go up until you have relief. Unfortunately, I am also in the nausea/vomit club when it comes to IV's......I am currently going through it right now as I am in the hospital for sepsis/pneumonia. The antibiotics are brutal, the docs order Zofran and Phenergan around the clock, not as PRN so that I get some relief in that department. They also switch PO breakthrough pain to IV dilaudid every 3 hours as needed because I don't tolerate it by mouth when I am that sick to my stomach. The Zofran/Phenergan duo works well for me thankfully, might be something to consider..

I am glad you got some relief, I don't wish pain on anyone.......unfortunately, it can't be "seen" so some people don't take you as seriously as they should. Luckily, I have a fantastic team who listens to me and makes my comfort a priority. I only wish that all doctors were like that.

Hang in there
Jenn 40 wCF

 

[lilmac7]

Amber, how is your potassium intake or levels? Not sure if that's something you have to watch or avoid with tx but I know low/depleted potassium levels will cause muscle cramps so it might be something to check out. I know this from competing in bodybuilding when you're in the cutting stage and ridding your body of interstitial (spelling*) water you can often get cramps and have to take extra potassium to combat them. At that stage I'd often get some wicked cramps in my back, hamstrings and calves particularly than other muscles, and it would often happen at night when I'm sleeping - like a complete muscle lock-up cramp with ridiculous pain to wake me out of my sleep. It also happened once on stage posing, not fun but on the up side tot hat is I saw others get it before I did so I never felt as bad for having it happen.

 

[imported_Momto2]

JustDucky, I had that problem all the time, people not taking your pain seriously because you seem function normally. I went into the ER once, asked for an x-ray since I thought I'd broken some ribs. The nurse who saw me and the doc argued that I couldnt possibly have anything broken since I was able to function and joke around a bit. They changed their tune when 5 rib fractures showed up on the film........... I got the pain meds I was asking for!

 

[mikorankin]

Christina,

Nobody should ever bash a patient for being on narcotics since it's all about being able to function. However, there are many pain medicine specialists that need scrutiny. We have all kinds of them in south Florida, some great- many of them are very poor at their practice. I'm not blanketing them with the stigma. As a matter of fact, my physician away from my regular CF physician at Emory is a pain specialist...legitimately board certified. He is actually one of the brightest physicians I know. I am fortunate that he is also a great friend and a client. That aside, he is the first to tell me that mis-managed narcotics can wreak havoc....not to mention that narcotics have an effect of slowing down respirations and doing a number on the liver when they are combo drugs, i.e. they contain acetaminophen (Percocet).
Patches should provide the best delivery of the medication whild preserving liver and kidney funcitons better than orals. The fact that you sweat on the patch should not interfere with the delivery system. However, you best way to make sure is to have the doctor ask his Duragesic rep. The rep probably knows, but if not, they can shoot your question up to the company's Medical Science Manager/Liaison. They should be able to give an intelligent answer to your question. Hope that helps.

 

[beautifulsoul]

Originally posted by: lilmac7 Amber, how is your potassium intake or levels? Not sure if that's something you have to watch or avoid with tx but I know low/depleted potassium levels will cause muscle cramps so it might be something to check out. I know this from competing in bodybuilding when you're in the cutting stage and ridding your body of interstitial (spelling*) water you can often get cramps and have to take extra potassium to combat them. At that stage I'd often get some wicked cramps in my back, hamstrings and calves particularly than other muscles, and it would often happen at night when I'm sleeping - like a complete muscle lock-up cramp with ridiculous pain to wake me out of my sleep. It also happened once on stage posing, not fun but on the up side tot hat is I saw others get it before I did so I never felt as bad for having it happen.
Mark,
I'm pretty sure my Nephrology doctor checks my postassium levels every couple of months. He hasn't said anything lately. I see him in clinic on the 30th this month so I'll bring it up. Thanks for mentioning that. I also had labs drawn a few weeks ago for ferritin level and iron. I haven't heard back from my nurse yet what the results were. She's on vacation.

 

[LittleLab4CF]

Fentanyl patches have been around at least 15 years, as around then I started using them. Rheumatoid arthritis ranks right at the top along with acute pancreatitis or severe chronic pancreatitis, severe gout and many more than I would like to think about. Your doctor is probably being cautious. Even though 25mcg/hr is powerful, there is 50mcg/hr and 100mcg/hr. Of course you can go to a couple 100mcg patches and if that isn’t doing it, there is now a sublingual fentanyl that is very high dosage for break through pain. It is not uncommon to be started on 25mcg/hr patches. Now you know it doesn’t cut it so contact your pain management specialist and tell him or her that this needs to be stronger. Getting acclimated to fentanyl is not as straight forward as one would think. Even though it is inadequate, it is safe. The potential of nausea is better, in my experience is considerably lower, and zofran is your best shot if you do have nausea. You didn’t complain of nausea, if I remember correctly with fentanyl and this is a good sign. As your dosage is titrated to be enough, but not too much chances are you will enjoy a quality of life unknown to you for some time. In my experience two things involving narcotic tolerance has been interesting. Unlike meperidine or oxycodone, fentanyl was completely effective for a very long time before I needed to increase the amount due to tolerance. Another surprise, I stabilized on a typical amount and though I take a fentanyl medicine for break though pain, including both sources of fentanyl, I haven’t increased the amount of fentanyl for almost ten years. Didn’t see that one coming, and is heaven for both me and my doctor. Narcotics can be the undoing of patients and doctors alike if, as a patient becomes opioid tolerant, the doctor proactively switches the patient on a different family of narcotic in hopes a new tolerance will have to build and around and around they go. All they need is a diagnosis of RA or CF and they feel your diagnosed pain.
There are two take-aways from being placed on a fentanyl patch. The first is, “all who wear the patch, abandon all hope”. You are now on a palliative opioid and only after they cure RA and CF will they expect to wean you from it. The second take-away, your soon should be pain free, from the most ideal narcotic I am aware of. A thousand times more powerful than morphine, 100 mcg of fentanyl IV is equal to an IV 10mg of morphine. This translates to needing 1000 times less chemical in your body. Fentanyl is slightly euphoric, just enough to offset any chemical tendency toward depression. Mentally most people adapt much quicker than with the “codone” family allowing self care and driving a car sooner. It has a short half life, as a gas it is in seconds, IV can be three or four minutes and oral is about 2hours, although the literature on the drug says an accumulated serum level takes considerable more time.
All narcotics contribute to constipation and a constant regiment of Mirilax starting now, if you haven’t already, and more if you already are taking. You can ask your pharmacist if they have or can get adhesive covers to protect your patch showering, however most companies make the patches adhere in showers as long as they aren’t too hot. I hope this helps.

 

[hannahj1d]

I have a question regarding pain management while in the hospital. About a year and a half ago i switched care facilites due to location, my first doctor had me doing multiple things regarding airway clearance (ippv, ppb, pep, vest) so he had me on a fentanyl bolus before treatments and massages to help recoupe back muscles/ribs from coughing and i did great. When i switched the hospital was not as advanced and didnt offer eitherbof those things and i was too scatred to.ask for them cause i didnt want t gf em thinking i was just trying to get thevpain meds (seeing as iv benadryl is the only way to prevent me from redmans).

Mainly, how do i ask for scheduled pain meds with my tteatments without seeimg like i am just binging off them. (i just ask this because even at my lowest lows i try to keep my energy/mood high and dont like to.complain when im hurting so im scared they wont genuinely think i neeed to boluses.

 

[JustDucky]

Hopefully they will be compassionate enough to order them, comfort is important too. While in the hospital, I get IV boluses of dilaudid because my joint pain so much worse and the coughing causes severe chest pain. Luckily, my team is on board with comfort.. If I am not feeling as much pain, I cough better. Same goes with the joint pain, if I am not hurting so much, I move around better and that is better for me.
I would just approach your team, tell them what they did at the other center and how much it helped you and that you are experiencing discomfort with chest physio etc and hopefully they come up with a plan to make things easier for you.

I hope they help you, will be thinking of you.

Jen 40 wCF

 

[crystalina0814]

Thank you for all the advice and ideas.

Have any of you ever been given Intramuscular 4mg Dialudid (hydromorphone) shots to give yourself at home? I
have been rx'ed this. When in intense pain, I give myself an injection in the rear-end and I am feeling a million times better within minutes. This seems to be the most effective way to relieve pain (for me). I HATE needles and
was terrified at first...so I am in tons of pain before I even consider injecting. Have any of you ever used this method? How often did you need them trhoughout the day to stay ahead of the pain? Since it is bypassing the digestive system... is it as harsh on the liver or kidneys? Are there any opinions about this drug?

I have researched online and have spoken with my pain management team...but I was curious as to how often it is utilized here or by CF patients.

And, I swear I have heard or read somewhere that CF patients tend to metabolize pain meds differently and they have a shorter half life? Is this true and to what degree? For instance, before I had an opoid tolerance, I was extremely hard to numb at the dentist office for a root canal, was hard to numb for my port surgery, etc. Also, I can take a percocet and it will not last the 6 hours it is supposed to, instead it is wearing off after about 2 or 3 hours. This is the same with other meds as well...such as ibprofin, etc.

Does anyone know anything about this? Am I even making sense? Haha!

 

[JustDucky]

I am on dilaudid 4 mg orally for breakthrough pain every 3 hours as needed, my long term med is Fentanyl 100 mcg patches changed out every 2 days. The only time I have been given Dilaudid IV or IM is when I am in the hospital, the pain is much more severe during an exacerbation. I totally agree that given that route, the pain relief is sooo much quicker! During my last stay, I was given 4 mg IV dilaudid every 3 hours as needed, it made everything so much bearable, orals didn't work fast enough. I am glad you are getting relief finally

Jenn 40 wCF

 

[azdesertrat]

I too have chronic pain.
It stems from cystic fibrosis & the numerous surgeries I've had to go through. I'm on meds for it.
The pain meds only take the 'edge' off; I'm never pain free.
It is miserable but I've had to learn to live with it.
In addition to meds I use a heating pad & hot baths; they give a bit of relief.
I also have Lidoderm patches. They work, but not too great.
I guess its just something I'll have to endure until I check out.
I hope your pain will be alleviated & life will truly be 'Just Ducky'.
You're in our prayers...