Dealing with having to take narcotics everyday and the stigma attached...Is it just me?

I am 36 yrs old and I was diagnosised with SCD at the age of 4. Since then I have been on several different medications along with blood transfusions and IV fluids to help control my disease. Along the way I have also developed several other conditions due to my SCD. I also have avascular necrosis, deep vein thrombosis, arthritis and mitral valve prolapse. Everyday I have SOME KIND OF PAIN. Currently I take percocet every 4hrs and I wear a fentanyl pain patch. Most of the time this decreases my pain but because my tolerance for pain meds is so high, it rarely eliminates my pain completely.

I am starting this topic because of a horrific experience I just had this week being in the hospital. I was admitted to the hospital and there was a doctor that came to see me. The first thing he did was ask me about my illness and the different meds I take. When I told him about my daily regiment he stated that there is no reason for a sickle cell patient to be on ANY medications unless they are in a crisis. I tried to explain to him that with sickle cell you have to try to head off going into a severe crisis which is why (at least for me) daily maintenance is required. I also tried to explain to him that I also have other conditions that affect my SCD and if I want to only take meds while in a crisis there is a great chance that at that time the meds won't work. I also tried to explain to him the pain I am in on a daily basis, still to no avail. He made me feel as if I were some type of drug addict looking for a "fix". This is not the first time this has happened to me. I know for me, it is very hard having to take so much medication all the time and never do I get "high" my tolerance is too high for that. I am one of those individuals that experience very real pain on a daily basis and have never misused or abused any medication.

How do you cope with drs. making you feel so belittled? No one truly understands what is like to live with this disease and also dealing with other ailments that arise because of the disease. Is it just me?

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Hello, Kilah
It is not just you. I am 41 years old and have experienced similar "poor attitudes" from so called health care professionals. You did not deserve to be treated like that. None of us do. I now have an article by a renowned researcher on SCD. I carry it with me when I know I am going to the hospital. He talks about chronic pain and the need for narcotic relief. In addition, my doctor suggests that I call him first for a direct admit whenever possible instead of having to deal with ER personnel. I get admitted to the hem/onc unit and the nurse there know me. They know the need for the pain medication. I hope that this helps.
Thank you so much for your reply. I have never met anyone elso who has sickle cell so I've never had anyone who truly understood my pain. It's nice to know that I am not alone!
Had that same messed up experience last week.....ERs are a last resort!!!!!
You're not alone. Hospitals should be the most understanding place, however, unfortunately they're not. Dealing with Drs is never easy. Very few truly have empathy to our situation. Mostly I feel as though I'm looked upon as someone who is 'causing a scene', especially when they're not acting promptly.

Recently my bad experiences have been with A&E. They have been slow, uncaring, and ignorant to my needs. I had to make a formal complaint, but this gets a response to any issue outlined. When I was feeling better I went to A&E to voice my opinion to one particular staff member and their treatment practices. They need to know!

Keep your head up and be strong.

I was once forcibly discharged from an ER when I was having a pain crisis. I had to find a taxi to take to a different hospital.

I agree that ERs should only be used as a last resort! Call your hematologist first.
ur like me i have pain every day i suffer from chronic pain
find a dr who is a pain specialist
you need a better maintanince drug if u have to take percs all the time
but im no dr jut tellin u from my personal experience
my daily chronic pain med is methadone cause of the long half life
do your research and find a better dr
i hope all is well
be well
I've experienced this type of treatment many times, even with a doctor who was the head of the '''Sickle Cell Clinic'' at a hospital here in Atlanta...She knew me in my career and knew I as a professional, educated woman, and not some druggie on the streets...She still spread lies to the hospital docs about me once when I was admitted to the hospital. She told them that I was a narcotic lover! I rarely even liked to come to appointments and barely came to the hospital more than 2-3 times a year, so I don't know why she said that about me, but I gave her a piece of my mind after I got out of the hospital!

A word of advice though...I have pain everyday too, and have been on the meds daily that you are currently taking, but at some point, your body just gets used to all of these narcotics and starts to require MORE and MORE just to handle the pain! In fact, if you don't keep up with the schedule of meds, it will INFLICT pain upon you...I had gotten to the point you are now about 3 years ago, and had to hit the 'RESET' BUTTON in order to keep these narcotics from being a problem....In just 5 years of rarely taking meds, I started with Hydrocodone, then Fentanyl, then Oxycodone, Demerol, Morphine, then finally, Methadone....By the time I was on Methadone at the end of the 5 year period, I felt like this whole thing was getting out of hand...I was in pain everyday, but goodness, these doctors seemed to be giving me something different all the time after one drug stopped working...And all the while when I tried to use anything herbal, herbs wouldn't work because I was on all of those narcotics.
So I decided to tell my doctor that I was feeling MUCH better and to wheen me off the Methadone narcotic, and you know what, he INCREASED my dosage! So I decided to just ween myself off slowly and DETOX, DETOX, DETOX, those meds out of my system so that I can start over again....I did successfully start over after 1 month of detoxing and much pain from the narcotics fighting me, but finally I won!! And for 3 years straight I didn't have to take ANYTHING for pain but something herbal, and now I'm at the point where I take Moltrin everyday, so I feel myself going BACK up the narcotic ladder again, because monthly I have to take Hydrocodone again...But as a rule, I try HARD not to take anything EVERYDAY...That way my body doesn't start expecting it, and I can stay out of the hospital needing painkillers as much as possible...I am now having to go for transfusions 3 times a year, and have been in the hospital 3 times within a year's time.
Hope this helps all for trying to cope with all these meds, because we don't want our heart to shutdown and go into cardiac arrest from all these narcotics, ya know?
Thanks for the reply Alana! I have actually gone through that routine as well. I use to be on Dilaudid, Oxycontin, Demerol and Methodone. The percocet are very mild considering what I use to take. I do worry about my organs and the possibility of them failing due to the amount of narcotics I unfortunately have to take to control my pain. My tolerance is so high at this point that it actually SCARES ME! I do know my limits and even if I am still hurting I don't allow the doctors to give a dose that I feel will jeopardize my life. I still endure a lot of pain everyday because the meds only make the pain easier to bare (sometimes). Other times I have to just deal with the pain and pray. If it were not for the Lord on my side I don't know what I would do or where I would be!!!!!!!
I cope by simply not dealing with them, or reporting them. Once I explain what my meds are and you have a problem with that, then you can A) adjust your attitude and treat me appropriately, or B) you can get off my case and have another physician who is comfortable attend. You aren't my regular physician, and when you feel the need to chastise me about taking daily long-acting medications for chronic pain due to SCD, then you take that up with MY doctor. That is the route that best suites me, and we all know that docs don't like to tell each other what to do. ;-)

I think based on your problems, you may need to try another medication. I am 25 yrs old, diagnosed at age 4 as well. I have SS with high fetal hemoglobin, so much of my early childhood I was ill, but went 12 years being completely crisis/problem free. I too have AVN of both hip joints and my lower spine. I am going to see an orthopedic surgeon on Monday, and I pray I'm not at the point of surgery yet. I've held off for 11 years now from my initial diagnosis of AVN. I started developing chronic pain issues after multiple infections and crises in 2006. I was on Percocet q 4 hours, alternated with Tylox.

I was constantly in pain, and the percocet was not doing it. Not to mention my liver enzymes became elevated, and that was due to the acetaminophen component of the Percocet. I tried a Fentanyl patch-started at 50mcg, and went up to 75mcg. That only worked for about 2 weeks. Then, my doctor decided it was time to go to something a bit stronger and still long-acting. So, I started on Oxycontin. First dosage was 40 mg every 12 hours, and within one year I was up to 160 mg every 12 hours.

Needless to say, I had to keep escalating my dose just to control my pain. My doctor had said that the beginning that we would try the Oxycontin and max out on that before switching to something else. I ended up getting a consultation with an anesthesiologist who has his own pain clinic. He has worked with SC patients before. He recommended that I switch to methadone, as many of his patients (SC and others with cancer, etc). had been able to start at one dose and remain on the same dose unchanged for many years, but still receive adequate relief to function in life. He equated that on my then current dose of Oxycontin (160 mg q 12, plus I was taking short-acting meds like Percocet or Oxycodone because I was still in pain) coupled with the other meds I was taking nearly 400 mg of morphine a day. Converting that to methadone would be only (1) 5 mg tablet a day. Within 1 week our plan was to go to 7.5 mg a day and that would be the dose until we needed to tweak it. I went back to my hematologist and she agreed with his plan. That was 2 years ago. I now take 60 mg a day (20 mg every 8 hours).

So, my tolerance has caused me to adjust the dose with my doctor a bit, but no where near as much as with the Oxycontin. Also, I found Oxycontin to be much more sedating. During the last 2 years since I began taking methadone, I have stopped taking it twice. Once just to see if I still had chronic pain, and another time because I was just sick of taking medication. I tapered myself off of it. I was fine until I began to have regular crises again and docs put me back on it to help manage pain in the hospital and at home. I still take it and for me it works okay. I only take short-acting meds when I have breakthrough pain or am in a crisis. My baseline pain level is a 2 or 3 on most days just taking methadone 3 times a day. I call that miraculous considering I could barely get out of bed due to pain many days with Oxycontin and before that. Its not for everyone, as nothing is. Its something to discuss with your doctor.

I could begin a taper tomorrow and come off it just to see where my chronic pain stands. Its not an issue for me. When I go to a doctor I let them know I take it for chronic pain associated with SCD. If they have a problem with that, then they won't treat me. Simple as that. Just had a doc back home who seemed to have some views about it. Well, I paid my bill and said Sayonara! He may be fine to be my parents' doc, but there is still that stigma towards Sickle Cell patients and many narcotic drugs there in that podunk town. The healthcare there is horrible and will never go anywhere. I wouldn't go to the hospital there to let them put stitches in a cut. I'd risk doing it myself, its that bad...I've been burned by them seriously too many of which where I nearly died, one friend with SCD who did die and two others that were harmed for life. Thank God for change and doctors that do care.
mine isnt that bad that i have to take them everyday and i try not to take hem if i dont have to because i dont want to become dependent on them. however sometimes my hematologist prescribe me like a 100 pills of dilaudid at once,instead of the 20 u get at the ER, which i think its too much because the more i have, the more i feel i have to take. but i have a question, how many dilaudid pills do you think is ok to take before u realize you have to go to the ER
I am amazed to hear everybody's story so I decided to share mine. I am 45 years old and I am on a regular regiment of oxycontin and I take 60mg every eight hours. I do have to take it everyday because I suffer daily with SCD. I was diagnosed at six months old and I have SS. When I moved from my hometown I brought my medical records with me and thank God I found a doctor who understood my condition, before I actually had a pain crisis. I live in Atlanta, GA and I didn't want to go to Grady Health Systems although they are known to have the best comprehensive sickle cell clinic in the nation. I chose not to go because I didn't want to be a part of a cokkie cutter program. That may sound a little crazy, but I don't boast on being the smartest person in the world. I know my body better than anyone and I wanted a doctor who respected that fact. If for some reason I go into a crisis that can't be handled at home and my doctor is no where to be found, I take my latest lab results with me to the ER. This brings credability to the situation and I don't have to deal with the judging attitudes. I have been there and I know what you guys are talking about, that's why I wanted to suggest that you get a copy of your labs everytime you have your blood drawn, just in case you are not near your ususal hospital or doctor when you need treatment ASAP.
Its only recently in the past year or so that I've experienced daily pain however it really isn't all that severe for me. For the most part I can take 800mg of Ibuprofin and it will knock the pain out. However recently more and more I have been having to go for the percocets for pain relief. There used to be a time when a 30 pill prescription could last me like 3 months. Now it lasts me like 3 weeks. I had to increase the strength of my meds though because of an increasing tolerance, in a year my prescription has gone up from 5/325 to 10/650 mg. While I don't have to take pain meds daily or use as strong of a prescription as some of you do, I do feel as if there is definately a stigma. I have never abused my medicine for the simple fact that its too easy for me to get however every time I take a pill I feel a little guilty even though I need it.


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