Pain Management/RD is throwing her hands | Arthritis Information

I have finally broken down after 3 years of almost constant pain and failed drug. I am tired literally.. My Humaira doesn't seem to work as effectively as I would hope taken the risks of a biologic into account. At my last appt I spoke very candidly about the real everyday pain I experience with my RD. She really has been great until now. It seems at every visit I make it know that I am feeling alot of pain, tiredness. I quit my job in July , I just needed rest or so I thought. I am now attending the University where I live ( 4 class) Not too bad but I find myself struggling. I can hardly clean my house, my husband has been very understanding lately but I know he gets mad.
I dont think My RD knows what to do for me. She was so hell bent on getting me off prednisone(which helped somewhat at 10mg daily). She blames alot on Fibro and tells me that Vicodin is the only med that will really help yet she also told me at the same appt ..oh sorry you will run out 4 days early..the withdrawls will not be good and sent me on my way with a script for 5 days later. She said that pain management would be an option.."but so you really want to be 42 and on heavy drugs?" NO I want to feel like I can FUNCTION!! I still have 3 boys that need my care and I am not cutting it as a mom. I am at a loss ...I need advice.. Should I switch doctors? Have any of you felt that they just give up on you? I know she will be mad when I ask for my records to see the pain specialist on Dec 10 ...but should I really give a crap? I am sero neg and She always tells me yeah you have some stiffness ..She cant feel the way I do and alot of you all. Any advice will be welcomed.
I have done alot of DMRAs and methotrexate and enbrel.
I am on Humaira, Lyrica and Flexeral at bed..and vicodin. I dont want to be considered a drug seeker , I just want help.
Thanks to all of you for listening
ChrisOh I'm so sorry Chris! I think it is definitely time for pain management and at least a consult with another RD. I'm seroneg too, so I can relate to your frustration. I have young kids at home too... it's awful when you feel like you are not doing your job as a mom.
Remember you can always vent here. I wish you better days!

Maybe time to give Remicade a chance? I know when I was one Humira it did nothing for me like the Remicade has done for me. And the more under control my JRA is the better my fibro acts. Which has really helped me to feel a lot better and do a lot better.

I hope you can find some relief soon.

Much & Many hugs to you.

I have definitely thought of Remicade and brought it up to the RD. I think you are right its time for a changeI would be hard-pressed to believe that a certified rheumatologist in the US would not know how to treat you......but then I've heard stories about some doctors who really just don't care.

First I'd see another rheumatologist for a second opinion.

I can't speak about the biologics, but I do know that many drugs lose their efficacy over time. So it's often a good idea to switch to another drug for a few months and then get back on the original drug.

I've heard that a number of people who take any of the biologics often take Methotrexate concurrently. You might explore that.

While I can appreciate that Vicodin is the only salvation for some people, I've been adamant about not taking it or any pain killers other than an NSAID or Celebrex, even though Vicodin has been offered to me by my RD. I just can't deal with the fogginess that comes with those drugs. I also will not take systemic Pred, but I recognize that for a lot of people it's a godsend.

Go get a second opinion. You've got to have a doctor whom you feel is working for you and with whom you can collaborate regarding your treatment.

Sam12342009-11-25 13:22:50I think you are right in seeking help to manage your pain. I take Vicodin it has helped a lot. I have taken Predisone and it worked, but I really can not stand it for long.

The best thing I have done for myself is low impact exercise. It is so hard to get started when you feel so poorly...but I believe that the half hour or hour you spend on yourself exercising will make the other 23 hours in your day so much better. Again, I KNOW it is hard to exercise, but it is so important for those of us with RA to keep moving.

One other thing, please do not feel guilty about the children, my guess is you do more for them than you realize, and none of us can do ALL we want to do all the time. Make time for yourself, force yourself to get exercise. It took me several weeks and the next thing I knew I had more energy then I had in years.

I wish you the best

I have been seeing a pain management dr. for quite a while. There are more options available to you than just pain killers. My rheumy and pain dr. work together to manage the disease and the pain that comes with it. I have also been very hesistant in taking meds. I am a single mom and teach-I was worried about feeling "out of it". My dr. provided nerve block injections which helped for quite a while. However, this summer I was hospitalized due to lung inflammation and rib pain/inflammation. Now I take percocet-it's the only way I can get a full breath. The pain dr. should listen to you and provide you adequate relief. You will also have to sign a contract regarding use of pain meds. I have always been very upfront with my doctors regarding meds. This will prevent you from being labeled a "drug seeker" I have been very honest with my dr. regarding dependence on pain meds. He says that very few people who are treated for chronic pain actually become addicted. If you actually need the meds, you aren't going to get that "high" feeling that people who take it recreationally get. It's just going to make you feel better.

I take my pain meds only when really necessary. One reason why I took a referral down to Duke was to find if there was a solution other than pain relief. Both my RD and pain dr. want me to take it every morning, otherwise I start the day out with shallow breathing-not good. Hopefully your RD and pain dr. will work together to find you relief. It shouldn't be a case of your rheumy "giving up". If that is how your RD feels, you need to find another dr. Pain is considered one of the ER "vital signs". It is very real.

I also wanted to add that untreated pain can also cause serious issues. When in the hospital, one of the drs asked why I did I want to "tough it out"? I told him that I had always been that way, and that I have been blessed with a high tolerance. I played rugby through college and I guess I saw pain as another challenge. He said that you have to remember that pain is your body's way of telling you something is not right. I was also running very high blood pressures and pulse rates. It took a number of days in the hospital to get the pulse down below 150. This is not good. Fighting pain is exhausting-mentally and physically. You deserve relief. Also, realize that everyone experiences it differently. What is agony to one person, may be tolerable to another. That doesn't make one person better than the other. I admit, I had preconceived notions about people who used pain meds daily. I've broken bones, given birth...things that I thought were painful(and the were). But, a whole new world opened up to me(sadly) with this latest round of RA complications.

In one way I have been lucky in the fact that I have the "evidence" of ra damage. Xrays, CT's, lung function tests-all paint a picture that illustrates my symptoms. I feel for those of you that are struggling, but can't get drs to listen because you "look ok".

Alright, I have rambled enough. I just hate to hear of people having a hard time. Anybody who has actually taking the time to read all this-give yourself a gentle hug. :)

Rocckyd,

You bring up a very valid point about people who want to "tough it out" by not taking pain meds. Chronic pain leads to more problems, physical and emotional. I applaud those who need and take the pain meds without abusing them.

However, some people [myself included] go into total brain fog on pain meds......and the fog is worse than the pain. Can't work, can't focus, can't enjoy life. For people like me, it's not a matter of toughing it out, but rather choosing the lesser of two evils.

I get the "but you look fine" comment ALL the time. LOL If they only knew!

Sam, I hear you load and clear and I am sick of saying I dont feel good. I cried tonight. I took my Humaira 2 days early just so the burn in my hands and feet will stop .. Its horrible and you are right I dont believe if you have pain its an addiction thing...you might be afraid that the pain will come with out the pain meds....I do at times. Then it is all in your mind in a way. The lesser of 2 evils... I dont know which one I want anymore.Have you tried tramadol? It's a synthetic opiate-type drug, but it's not a controlled substance (yet). Many doctors are more willing to prescribe tramadol than the stronger opiates (vicodin, etc). There are some cautions about taking it with SSRI's or a few other meds, but the chance of serotonin syndrome is very rare. I think we each need to make conscious, informed choices when it comes to drugs. An update- Went to who I thought was a pain management doctor- She is a physical medicine rehab specialist-which under the the physicians web site site states that RA is treatable but such a dr.
As I initially wrote the pain has become near unbearable, I am having problems doing housework, going to school its really hitting to the core. I am getting really down in the dumps as of late, Maybe its the winter blahs, who knows.
Ok so at the appointment today she tests my reflexes talks to me about why I cant seem to exercise( It HURTS! DUH) maybe not an excuse but I am not over weight by any means and used to be quite an active person . This is what she recommended:
Go swimming
stop taking the flexeril before bed as RA doc wanted me to.
Gave me lidoderm patches , which i am excited to try
Asked me about the use of my vicodin, and I told her it barely takes the edge off, I have been on it for 3 years now at 7.5 I every 4 hrs.
She wrote me a script for 10 every 6. I cant seem to think that its different to what I am already taking!
She went to her little room told the receptionist to see me PRN and see ya later. I thought she was going to work with me to get to a better point?? I was pretty dumb struck. She didnt write refills on any of the meds so who is going to write them ? I am not stupid I understand that controlled drugs are a big issue but why even bother writing one script .I wanted more that help from drugs and I didnt get any! Any feed back?
It is a constant battle. For years I did not take pain pills. It became necassary for me to walk. My feet and ankles are in bad shape. I take vicoden. I understand what you are saying. I take flexeril also at bedtime.

Yes RA pain can get so bad that Lyrica, vicoden, flexeril and antiinflamatories do not always do the trick. Sorry you are not getting relief from the Humira.

I also get a great deal of fatigue. Honestly I do not know much about percocet. I tried it and I just slept. So I do not think it would be an everyday option for me. On those really awful days maybe sleeping threw it would not be so bad.

You are somewhat in charge of your medical health. I would try to take mtx or a duel medicine. Trying Remiciad may do the trick also. Good luck getting off of the prednisone. It is a scary thought. Not always that bad after you have actually done it as it may sound at the moment.

I am having a painful week myself. I broke down and called the GP and asked for some pred. The receptionist called back and said to call the RD office. I have not done that yet. I see the RD in a few weeks. Guess I am sort of sitting on the fence about it.

I know the many options. Truth is I have tried most of them. I am concidering getting the shots in my spine again.

I wish you luck in what ever you decide. I just hope you find something that makes you feel better.

milly2009-12-16 20:32:30Do you have access to a pool? Start out slow. Maybe just 5 minutes of walking along the edge in the shallow end to start, just two or three times a week. If there's a hot tub/whirlpool available, give that a try after your dip in the pool. It can really help a great deal. It's not an overnight miracle - the improvement will come gradually. Well RA is treatable by a physical medicine doctor. They usually just handle treating the pain part. You still have to get biologics and other RA meds from a rheumotologist. I am not sure why physical medicine doctors are against flexeril of all things. They told me that they counter act with antiinflamatory meds.

It was sort of strange my RD at Mayo sent me to the physical medicine doctor at Mayo. Then they did as yours did and wanted to take me off of my fibro meds. My RD had prescibed them.

Well I guess she wants you to come back once a month? Honestly many RD's do not even prescribe pain pills. Most want you to get them from your GP. I know that you are seeking RA management. Many doctors may wish to see you for a while before giving you strong pain pills.

How did the patch work for you?

Chris, so sorry that you are having so much trouble and the docs don't seem to be helping. Rather than just swimming, I would see if you could get a script for aquatic physical therapy where they work with you, very slowly, in the pool. I found that to be some help, where as there would have been no way I could just start swimming.

As for medical pain management, over the summer I switched from Vicodin 10's every 6 to the Duragesic (Fentanyl) patch. It is still opioid, but I find the relief much better and even. Maybe that would be an option for you.

Also, I'd agree it may be time to try another biologic. As someone mentioned maybe Remicade, or one of the newer ones like Simponi where it's a once-a-month self-injection.

And lastly, it is unfortunate but there are many docs out there who are simply not doing the best job for us, and you may need to find some new docs. It is frustrating and unfair, but that's the sad reality of our situation. I wish you the best.

Chris,

It's a real downer, I know. And I'm sorry for that.

Let me tell you what worked for a friend of mine: swimming every day in an indoor heated pool. She started ever so gradually and worked her way up. It did a couple things: it kept the limbs moving and it lifted her mood. Just as importantly, it gave her a new social opportunity....a chance to fit it with other people. [She had been isolating herself.]

From a psychological standpoint, I can tell you that depression is a VERY common occurrence with chronic pain. One of the things we know about depression is that exercise itself helps excite the endorphins which helps elevate the mood.

http://www.webmd.com/depression/guide/exercise-depression

I know it hurts.......but the warm water of the pool will help soothe. You don't have to become an Olympic athlete. You can start with leaning on a kickboard and just moving your feet.

When you exercise and get those endorphins moving, you'll be better able to deal with the pain.

As for pain meds......we all reach a tolerance at some point in time and many of us find it best to rotate the drugs.