Trying the Pain Management Angle

[Babs RN]

Good evening everbody--hope you all had a great weekend. Mine was ok--actually went to see a movie(13 Going on 30) but that's another thread. My question for all you wonderful ICers out there is this: I am going to see my first pain management specialist and wondering even where to start--since I have nearly continuous pain with breakthorough--all though I better than normal since the hydro--pain probably went from constant 8-10/10 to 5-7 which is a vast improvement--what is the proper ettiquette for giving my 2 cents on what I think would be the best long term benefit for me? Or do these pain guys dictate? I'm a little burned on this because I had an appointment in Feb with a guy who told me flat out before my first appt that he hates treating nurses because we know too much and he hates IC'ers because he can't pass stuff off to being psychosomatic. Needless to say, he never saw me. While my docs now are giving me pain pills, they are short acting and wear off--which means for example by the time I get home from work I am writhing and it takes me hours to get on top of things...which becomes bedtime...then my sleep is affected...and I do that 5 days a week. Not to include the most important part of my day Boo(Lindsey)care. All of this violates what I tell my patients--don't let your pain become so severe that it is unbearable because it takes that much longer to get it back under control. Any suggestions or tips for the first appt would be appreciated. Thanks in advance--up,up-it's in the sky, no it's in a plane--it's one of those crazy IC women:)


Hugs and kisses for all,
Barb

[Hangin' Tough]

I think that there is a huge spectrum of treatment philosophies with Pain Mangement Drs. I went to see mine on Thursday and his statement was "you know how you feel, you know what you need, I will let you decide what you need". That is exceptionally liberal, but I have a medical background and he trusts my judgement. I am now taking percocet 5/500 4X per day, baclofen 20mg 3X per day and ditropan XL up to 30mg per day. I just had a hydro last Monday, seemed to help with the frequency, but if anything, made the pain worse. I could use stronger medication and get better relief but I commute to work. I am trying to work through this, but I think I see the end of that approaching. Bottom line, tell them your symptoms and how they affect your daily life, assure them that you will follow the treatment plan to the letter and you should get a good outcome. Good luck!

Steve

[Babs RN]

Thanks for your input Steve. I am an RN, so I hope this guy trusts my judgement too. I also have the commute aspect, a 3 year old and a hubby on his way to Iraq. I think my pain control is woefully inadequate right now. How well does the Baclofen work for you--do you use it for spasms? I haven't seen it in a while but gave it to a lot of MS patients in my early nursing days. Percocet works for me, but that is all I have for pain right now and need some adjuvants. Either that or something long acting--thanks again.

Barb

[Hangin' Tough]

The baclofen is for spasms and definitely works. It is very effective in concert with the percocet. My pain doc has stated that if I don't get relief soon, he wants to switch me to Methodone and Neurontin. He says that it is a great combination. If we have to go for the long-haul, I think that will be the choice. If you need other info please let me know. Hang in there. I think if you get a good pain doc, you will see some relief.

Steve

[Babs RN]

Thanks Steve, I appreciate the help.


Barb

[Ginny]

Babs,
I don't really know what you are asking. Please explain. Even though Steve found a liberal pain doc most are not like that. In the 20 years of experience I have found most doctors fall short of giving us the pain meds we need.

Ginny

[Morgan Stone]

Hi Barb,

I was very fortunate to get into a good pain clinic the 2nd try. The first visit was simple, we went over the symtpoms and thank god he knew what IC was! He prescribed the the fentanyl patch but I had an allergic reaction to the material it was made of and was unable to wear it. It did work quiet well tho. 2nd visit, he asked me what had I taken that worked and I told him percocet had worked well but wore off quickly and asked about a long-acting percocet. He started me on 20 mgs of oxycontin twice and day and 3rd visit, he moved me up to 30 mgs twice a day. The oxycontin works very well but it is wearing off after about 8-9 hours so Im hoping next visit, he will up it to 3 times a day. As I said, I am very lucky to have such a good doc (actually a FNP) who cares about his patients.

But... my first visit to a different pain clinic did not go as well. I had been honest with them about taking a couple percocets that werent prescribed to me and admitted I had smoked marijuana once for the pain and they refused me treatment. Lesson learned here: don't tell everything you know :-) I later found out through some other people that had went to this same pain clinic that they looked down upon people who had IC because they didnt think it was a legimate chronic pain issue... like to see them suffer with it for a few weeks AND then say that!

Anyways.. I think its hit and miss nowadays.. if you are fortunate enough to find a good doc, then you are set.. if you arent happy with the one you find, then find another... there are lots of pain clinics out there. Good luck to you hun.. keep us posted. :-)

[lotsofgirls]

Hey Babs,
I have been under the care of a chronic pain center and pain specialist there for over 3 months, and they are literally a lifesaver for me. Your pain levels sound like mine did. The pain center I went to had me do a pain diary with break through meds for 2 weeks, and then analyzed it to see what would be needed. I then went on a continuous pain med, and continue to document breakthroughs for dosing. I also went on neurontin to tamp down the pain levels, and I am working my way up to 2700 mg per day very slowly because of side effects. I also went through a core stregnthening program and pelvic floor therapy to learn to relax the muscles that guard the bladder and use the TA to protect my abdomen. I am now getting help from an Occupational Therapist, on documenting flares when working to try to determine flare up plans to reduce the flaring. Also, we are working on a pain plan for when I can't take pain meds, so that it doesn't get out of control completely, although it won't be controlled as well. Today, I am seeing a nutritionist who will suggest a food plan to manage the food groups, fibre, nutrients with IC and also to review any additives etc in my meds. All in all I am pulling out of the long dark tunnel of pain, and re-entering life with the support of all of these people. I see the pain doc every month now and we adjust meds, or discuss other strategies, we may do injections soon as well.

I hope that information is helpful to you, have faith, and make sure that you believe in your pain doctor (I know you know this already, but sometimes nurses take care of everyone else but themselves, and we love you and want you to be looked after :hi: )



Cath:butterfly