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_Christina
Veteran Member


Date Joined Feb 2007
Total Posts : 553
   Posted 3/8/2011 9:19 AM (GMT -6)   
Hello all,
I have been reading here for 2 days, and feel like I would like to participate even though my pain levels aren't quite as severe as some that I have seen here.  It seems like a good place to get some perspective and support.  I don't have a live support group, so this is where I get it.  I am active on my condition specific forums as well.
I have Rheumatoid Arthritis, Bipolar, Obstructive Sleep Apnea, Seasonal Affective Disorder, gluten sensitivity (not celiac disease), anemia, and "other generalized muscle soreness" that I haven't found a cause for yet.  I live at a pain level of about 3-6.  I might have a 1-2 day in there somewhere, but they are "gifts" and I have "flairs" of 7,8,9 occasionally. Due to my bipolar issues I am legally disabled as of last September.
I am 32 years old, married, and have 3 girls ages 12, 10, and 6. Five years ago I had no medical problems whatsoever.
 
What has happened to me lately is this: Three weeks ago I went to my 6 month appointment with my rheumatologist feeling like I have a lot of pain and fatigue and something must not be working and I need to be prepared to adjust medications to a more effective dose. What he said is that he feels that my inflammation is under control, and that's what the medication is designed to do.  The medication is doing it's job.  The pain that I feel is from the joint damage that was done before the inflammation was decreased.  The damage is not reversible, the pain is not going to go away, but like getting into a pool of cold water, I will get used to it over time. He will not adjust the pain medication because if I take something too strong for too long I will become addicted to it , it will loose it's effectiveness over time, and the weaning process is worse than the condition itself.
Ten days later I was in my General Practitioner's office saying this cannot be right, should I go to a different rheumatologist?  Does it sound correct?  What do I do now?  How do I treat the daily pain?  I was planning for it to get better- I was pushing myself to reach a closer "end"- this news of it lasting forever (and only getting worse over time) makes me want to give up.  And in fact I had given up in a sense, I had barely gotten out of bed in those ten days.  He agreed with my rheumatologist, saying that it seemed right and made referrals to a dietitian to help me loose weight so I will put less strain on my weight bearing joints and to a pain psychologist who is used to working with mood disorders and chronic pain.  He told me to not take Motrin as much as I have been (800mg 3x daily PRN as a first drug for pain) and use Tylenol first instead.  He is worried that because I am so young I will damage my digestive tract and will not be able to take that type of drug later.  He says "use it less now so you can use it longer".  He gave me a "keep your chin up" speech and sent me on my way.
Because I am not taking as much Motrin I notice more swelling in my fingers.  I have more daily pain because the Tylenol doesn't work as well, but if I medicate the breakthrough pain with Motrin, then I'm taking the same amount of Motrin as before plus more Tylenol than I was before I switched it around.
I was not able to get into the psychologist I wanted to because he wasn't accepting new clients at the time, but they scheduled me to see the counselor there.  When I went in I had to describe what RA was and what it physically did to the body.  She wasn't very familiar and was surprised to learn it effects body organs as well as joints, and that it attacked all joints in the body, not just the hands.  I went over the drug list and she had me describe what each drug was, what it does, what the side effects are and why am I taking it. (took almost half an hour)  She went into a tangent that I was taking way too many medications and I really should look into books on natural healing of arthritis.  She insisted if I heal my digestive tract with healthy eating and beneficial bacteria my immune system would stop attacking my joints and I would stop having pain. (She obviously read something really weird somewhere).  On the 2nd appt (yes, I went back- I thought maybe me or her were having an "off" day and I would try one more time) she wanted to focus on my bipolar issues.  She asked me if I thought maybe demon spirits were attacking me.  She again suggested that I should heal my digestive tract and part of that would be me thinking about not taking the pharmaceutical drugs, because that is what is causing me the most harm.
I walked out and canceled all further appointments with this person. I scheduled with a different psychologist in the office for the following business day, Monday.
On Monday at 10:30 I came in to find that the receptionist had not informed the counselor that I had canceled the 2 more appointments that had been scheduled.  I asked her again to make that known to her.  I checked in for the appointment for the psychologist, and waited 15 minutes.  I went out to ask if she was running late and the receptionist said she would call her office.  10 minutes after that I went out to ask if they got ahold of the psychologist.  The receptionist said she was about to call when her phone started ringing, and will call her now (sorry).  Five minutes later one of the other psychologists said she would check to see what was going on. Five minutes after that I went to the desk and found that they were texting her because she was not in the office.  It seems that she did not check her schedule before she left the office on Friday and was not aware that an appointment was added in the morning.  She thought her first appointment would be at 1:00 and would therefore not be in until then.  They were trying to get through to her to inform her I was there.  By that time I had been there for half an hour.  I offered to reschedule for Wednesday at 1:00 (between 2 other clients so I know she will be in the building).
I assume I will give this psychologist a 2nd appointment, like I did the counselor, but I'm not sure I want to go to this clinic at all.
At least with all of this trouble it kicked me out of the apathy cycle I was in.  I'm to annoyed to be apathetic.
 
So, what's your take on my story? From your perspective what do I do?
Thanks, Christina.
 
 

JCG32
Regular Member


Date Joined Dec 2010
Total Posts : 62
   Posted 3/8/2011 9:54 AM (GMT -6)   
I am sorry for your struggles. Also if I am confused. I would get another opinion. I think yes a condition you may have and you may have to learn to manage it but it can get to a better point with proper treatment. As for a therapist I have seen many in my time and I do think it is important for one to have knowledge of what you are facing. How can one help you if they are no on the same page with what you are going through?I don't have what you are facing but I have PN and RSD. I also see a special pain doctor who is an anestesologist. I have found they work better with pain treatment and relief then the general dx doctors. I wish I had more answers for you. Hang in there

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 926
   Posted 3/8/2011 11:38 AM (GMT -6)   
Christina,

Your initial experience with the psychologist suggests you might want to find someone else - though it is quite forgiving of you to still give her a chance. But if you don't like her, do find another rather than just "making do" with someone you don't think is going to help.

Also, as JCG32 noted, you should look for a pain management specialist. Many if not most members of this board see a pain management (PM) doctor. If you are going to be in chronic pain the rest of your life, you need to find a way to manage it. I think a good perspective is to find the medication that optimizes your quality of life. Too little medication and you may be in too much pain to do things; too much medication and you'll be too doped up to do things. So, find a PM who can work with you to figure out your needs. Most CP sufferers use time-release medication to cut down their baseline pain and break-through meds during flare-ups.

As I'm sure you know, there are various other drugs available for RA: abatacept (Orencia), etanercept (Enbrel), infliximab (Remicade), adalimumab (Humira), anakinra (Kineret), the old-standard methotrexate, etc.. If you haven't tried any of these, have a look.
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, Supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg daily, breakthrough - hydrocodone 10-15mg, or oxycodone 5-7.5mg. .25-.5mg ativan as needed for sleep, Verapamil 240mg SR (for tachycardia).

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16304
   Posted 3/8/2011 12:15 PM (GMT -6)   
Hi Christina and welcome to Healing Well's chronic pain forum. I am glad that you found us but sorry that you have to be here. At least by coming here you know that you are not alone in your battle with CP, as it can tend to make us feel this way at times.

Well, it sounds like you have been the gambit with drs. You could get yourself an appt with another rheumy and see how this one will react to your situation. I know it can be a real test finding a good one at times. I see one and think they are really quirky about things and pain medication seems to be one of the things they like the least. I can understand some of the things the rheumy is saying, meaning whatever he has you on for the RA is preventing further damage since that is the job of the medication. What do you take for the RA? Are you on any of the biologics? They really are quite successful in treatment and several to pick from. It never hurts to get a 2nd opinion. As far as the pain psychologist goes, some here have seen some good ones and they can be good at helping a person learn to live with their illness. I think acceptance of the situation is a big part of recovery, it can be a bitter pill to swallow. Or you may opt for a referral to a pain mgt dr. They are better educated for treating CP than any dr. I would want one with a lot of experience under his/her belt and one that does treat patients with RA if possible. I don't think you have been given a fair shake when it comes to treating your pain.

You are a better sport about things than I would be. I would not see any of the drs tied together in that group. The odds are not too good on one of the other drs stepping on the toes of one of his associates. That is one scene I totally avoid for that reason. Drs tend to stick together so this is why I avoid this situation.

They are so concerned about your GI tract, well what about your liver? That has been all over the news about pain medications that have acetomenophen in them and people getting too much. Now they are ging to lower the dose in pain meds or completely take it out of them. The same with your Motrin and Tylenol. My daughter had a lot of dental work done over a period of 8 months and she took Motrin only and ended up with liver damage.

If your health insurance is available online you may want to look and see who is on your insurance and call them to see what has to be done to get a referral. Pretty much all PM drs wants a patient to be referred by another dr and your PCP could do this. By doing it this way you can make a list of drs that the PCP can pick from and that will cut out waiting on his office to find someone on your insurance. One thing about a PM specialist there are two types out there. One will only do injections and procedures, no medications, the other will do the same but will write a script for pain meds if he feels it is needed. So, be sure to call and find out if the dr will write a script.

I hope that you can get something resolved one way or the other. Take care and keep us posted on how you are doing.
Moderator Chronic Pain Forum

_Christina
Veteran Member


Date Joined Feb 2007
Total Posts : 553
   Posted 3/8/2011 3:33 PM (GMT -6)   
Thank you for responding.
 I currently take 200mg plaquinel, 2000mg sulfazalizine and 20mg methotrexate for the as disease modifier drugs for the RA.
I take 1mg folic acid, 65mg ferroius sulfate, 10mg levoucorin Calicium, a multimineral supplement, 200mg Docusate Sodium, 10mg Zertec, 10-15mg Ambien.  For my bipolar I take 200mg Lamictal, 60mg Cymbalta, .13-.25mg Alprazolam.  For pain I take 1300mg of acetaminophen every 6 hours (from wake to sleep every day), 800mg motrin for breakthrough (almost every day), vicodin 5/500 PRN (about 5-10 days out of a month).
 
I have my liver/kidney function tested every other month (down from once a month) as well as a few other blood tests to look for inflammation markers.  My liver function has been down, but still within normal limits. I seriously don't know what to do.  I was hoping that by getting a psychologist who deals with chronic pain I might get other ideas on how to manage pain.  How to manage daily life, because I have not been keeping up.  How to figure out how the mental condition effects pain and how the pain effects my mental condition.
 
I really just don't know- I just know that it can't remain like this.

Post Edited (_Christina) : 3/9/2011 10:34:13 AM (GMT-7)


CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/8/2011 10:26 PM (GMT -6)   
Hi Christina, and welcome. I'm sorry that you've need to be here - it sounds like you're going through the mill at the moment.

For what it's worth - I'm no great fan of pain management teams under one roof - in my experience they are all more concerned with protecting each other's backsides and talking up how wonderful they are, than they are with patient welfare. Instead, I have a PM specialist, GP and physio who are individual but all communicate with each other. I will no longer touch pain psychs as I've had nothing but shocking experiences with psychologists and psychiatrists alike.

I think it's important as the others have said, that you find a good PM specialist - and also think it's well worth looking at controlled release meds to hopefully reduce your breakthrough pain. That sounds like an enormous dose of acetominaphen. Maybe the recommended dosages are different where you are but for paracetamol (as it's called here) the recommended maximum daily dose is only 4000mg.

Have you any hobbies, interests or other distractions that you can still do when your pain is high? Also - you may be able to teach yourself or you may need a psych to help you, but if you can learn deep relaxation and self-hypnosis I think it could really help. This has been - almost literally - one of my life savers.

Wishing you all the best.

Laura

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/9/2011 12:08 AM (GMT -6)   
Welcome to the family, Christina, I'm glad you found us.
 
Wow that's alot of acephen.... like StrayDog said they're getting concerned about new fact findings. I know my Pain Management Doc just pulled me off mine. For the last few years I'd been taking a combo pill, of narcotics and anti-inflamatory, only a couple months back when he upped my doseage on my percoset did he make it a strait narco pill. I'm glad to see that your doctor is being pro-active and monitering your liver.
 
It's hard to expound off what others have said; they've already given some good words of experience. And that's all I've pretty much got to go on too.
 
I know without my Pain Management doctor I don't know what I'd do. For starters I'd still be going around without a diagnosis, much less someone actively trying to help me manage my pain. Granted there's not much that can be done for mine. Like Laura I've got CRPS, and when you've got it like Laura and I do there isn't much they can do to treat us. Alot of it becomes mental outlook, and that's not always an easy thing to maintain... they've proven that those who suffer from chronic pain are frequently depressed.
 
My own experience with a shrink has reminded me exactly why I hate those people. For starters I can not abide the way they look down on those of us with chronic pain. It's all in your head, your faking, you spend alot of time obsessing about this, it's obviously a toxin related thing given the ammount of meds you take, and so fourth. Just for once I know so many of us want to hear they believe us, that our pain is real, and alot of times unless you have a diagnosis, or some film showing that's wrong, folks won't give you the bennefit of the doubt. With scientest it's all about facts and evidence, and pain can unfortunately be relative.
 
I agree with what everyone's said about finding another doctor by chance. I think Doctor's are called Quacks for another reason. Have you ever seen a bunch of ducks... they all kinda hang out together. If you go after one, they all huddle together, run together, and when they show up for food (or like now with spring) it's always, all together. If nothing else, there's a mental image for you next time you see a bunch of doctor's standing together.
 
Make sure you stop by and check in, let us know how things go, stay in touch, feel free to comment, make friends, share stories, share tears, but don't forget to share laughter.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant

_Christina
Veteran Member


Date Joined Feb 2007
Total Posts : 553
   Posted 3/9/2011 5:56 PM (GMT -6)   
Well, I just got back from the visit with the psychologist.  She seems OK.  Actually, I'm quite happy with her.  I guess there was a valid excuse  for the miscommunication on Monday, and she was able to laugh at herself over it.  She did ask why I switched from the other counselor to her, and when I gave my reasons she did not try to stick up for her, or belittle her, or enter into it in any way.  She did, though, seem extra careful that if I did not feel right about seeing her she would be happy to facilitate finding one who I felt more comfortable with.
She looked at my medication list, referred me to a PM Dr. who she worked closely with that handles medications as well as injections, laser (no clue), and non traditional main management techniques.  She was also aware that the PM was on my insurance.  I informed her that she would be the 6th doctor on my team, and the rest of them did a very good job communicating between them, since every part affected every other part.  She was familiar with my psychiatrist and rheumatologist and PCP, so that was good, and had no problem communicating with them.
The psychologist was aware of the ins and outs of bipolar, and understood RA as well, without me having to explain it to her.  She know the medications without explanation, and seemed happy that I had a medication list with me to pull out and show her.
So, I have an appointment for Wednesday next week, and I need to call the PM.  I now have steps to take for a way forward.  I always feel better when I have steps I can take.  I don't have to think about the future like this forever, 'cause I was really getting down about it.
 

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/9/2011 8:13 PM (GMT -6)   
Hi again Christina,

I could be wrong, but would guess that the laser is probably a form of acupuncture - instead of using needles to stimulate the acupuncture points, a laser is used - it's powerful enough to give a few mm penetration into the skin. I have a vet friend who practices traditional and laser AP - I did a lot of my clinicals with her when I was still at uni and she did seem to have good success using the laser.

I'm glad that things went well with your appointment and wish you all the best with your subsequent ones.

Laura
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