anyone see a pain management doc for their arthritis/enthesitis??

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snowbomb63
Regular Member


Date Joined May 2004
Total Posts : 61
   Posted 4/26/2009 10:10 AM (GMT -7)   
Hi everyone, I am really at the end of the line for finding help trying to control the pain I am in with my enthesitis from my Crohn's. The Humira has definately helped with the arthritic pain, but it hasn't touched the enthesitis. Every single place on my body where a ligament touches a bone is so inflammed and in pain, my sed rate remains in the 60's and so far, this pain only continues to get worse. I have seen so many rheumy's who have basically done nothing for me. It's like if they can't see it on an xray, they don't believe it can possibly hurt THAT much. I can't even get through a day anymore. First I tried Ultram, worked for awhile, then they put me on two Ultram, worked for awhile, then vicodin, one three times a day, now.... Well, I am now considering not going back to my rheumy but going straight to a pain management specialist, has anyone been to one? Has that helped? I truly am at a loss, I don't know how much worse this might get, does this go into remission ever? I don't know how much longer I can go through this, I am 48 and feel as if I am 90. Please let me know your thoughts. Thanks for listening.
Marla
Crohn's, Enteropathic Arthritis, Fibromyalgia, Daily Migraine

Humira, Entocort, 6MP, Pentasa, Topamax, Effexor, Ultram,
Sed rate sits in the 70's and can't seem to get it down


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 4/26/2009 5:25 PM (GMT -7)   
I am so sorry you are suffering so! I vividly remember my first full blown flare with enthesitis in so many places that I was reduced to using a walker on a good day and a wheelchair the other days. Remicade infusions helped me a great deal. It really brought that flare under control. Then last year I flared again. By this time I was no longer on biologics. My rheumy injected cortisone into three really troublesome places but I was still really crippled. Because I have avascular necrosis, all my doctors are reluctant to put my on prednisone. However, I just could not stand the limits on my mobility because of the inflammation raging everywhere. I did a 10 week burst of prednisone and that got things mostly under control.

With a SED reate as high as yours and the amount of pain you are having, why hasn't anyone suggested prednisone to get the flare under control?

To answer your question, I have not been to pain management for enthesitis flares. I have had my SI joints injected when I have had sacroiliitis. Some PM docs do that as part of their practice. Are you having SI joint problems too?
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 4/26/2009 7:21 PM (GMT -7)   
Best thing I ever did...no one should have to suffer...I strongly advocate PM docs (you wouldn't see a neurologist for bleeding from your bum...you see the GI...same principle) just as I strongly advocate 2nd opinions (and 3rd, and 4th, and n th)...

I hope the best for you...
"The earth laughs in flowers"


snowbomb63
Regular Member


Date Joined May 2004
Total Posts : 61
   Posted 4/26/2009 7:29 PM (GMT -7)   
Ides,

Thanks for the reply.... my doctor has put me on prednisone, but only for about one week, of course I feel great for about the first three or four days, and then back to this, my doctor is so reluctant to keep me on prednisone, but after listening to you, I think I either need to find a new doctor or be much more firm about this. I know when my Crohn's flares they treat it with a ten week course of prednisone without a problem, but this, they seem to just belittle me for. It's so frustrating when a doctor won't take pain seriously.

I do have SI problems as well, and have never even been offered an injection. I'm so frustrated trying to find a good, caring rheumy at this point. Can I ask, what was your prednisone schedule like for this problem, if you don't mind? Thank you so much for the advice, it's inspired me to get to the root of the problem instead of just masking the pain.
Thanks again!
Marla
Crohn's, Enteropathic Arthritis, Fibromyalgia, Daily Migraine

Humira, Entocort, 6MP, Pentasa, Topamax, Effexor, Ultram,
Sed rate sits in the 70's and can't seem to get it down


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/26/2009 8:28 PM (GMT -7)   
Hi Snowbomb glad to here that you finally got the prednisone and its helping you,i have RA and fibro and SS but i have not heard of this enthesitis what is it is it a form of arthritis due to the Crohn's disease or some thing completely different i know with the arthritis and the fibro the pain so so intense worse if its damp or raining my hands,feet,legs all swell also the mornings are the worse for me it takes me about an hour or better to just feel a little normal but the pain is always there it never goes away,To your doctor get a new one there are enough narcotics in this world to help us through these bad days so why must we be looked down on its not fare we are in real pain,pain has no age,no gender,no religion,no color,no race yet there are still people in this world that doctors look at like we are DRUG USERS looking for a fix if you are in legitimate pain ther is no worries of becoming addicted to these drugs cause we are using them for the right reasons its the people out there that abuse the drug system that wreak it on us and don't you think that if we had a different disease that people could see like heart disease or diabetes Crohn's is invisable to the world people see that we are in apin but can't see any thing physically wrong with us cause why we are on steriods sure we look well but they have no idea nither do the doctors,some lucky Crohns patients are lucky and are symtom free with out pain great for them but don't tell our doctors that they don't understand why all these patients are on all these pain MEDS they wreak it to everyone is differant.The pain clinic i think would help to some point but think about this if your own DOC won't help you with pain MEDS why would someone at the clinic i can't judge them i have never been to one before i did read on this site that you have to sign some consent form and do regular urine tests to make sure your only taking whats ordered for you,i alson heard that when you got to these places they try to convince you that the pain isn't so bad it could be worse kind of thing like its all in your head maybe i'm wrong but we have 1 here and in the city and those people don't seem any better of than they were before the joined the clinic but its worth looking into it might be the right thing for you. Best of luck to you on your journey for pain meds keep us posted on your progress. Your friend Jenn smilewinkgrin
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 4/27/2009 8:50 PM (GMT -7)   
Snowbomb [Marla], when my rheumy feels I would benefit from a prednisone burst, he typically prescribes the following regime:
40-40-40-30-30-30-20-20-20-10-10-10. My rheumy only prescribes a prednisone burst if I have so many inflamed tendons that it is unreasonable to inject them all. My last flare required two bursts like above to get the problem under control.

When I started having SI problems, my rheumy ordered a MRI of my SI joints. When it turned up that I had inflammation in the joints he immediately sent me to a Physiatrist. He is board certified in Physical Medicine and Rehabilitation. He does not prescribe medications to deal with back issues. He injects - better relief for me that a handful of Vicodin.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 4/28/2009 5:06 AM (GMT -7)   

I also thought of pain management. It is to the point that Tylenol does not even work for me. I started seeing an acupunturist. last night was my second visit. I am not sure if it is in my head or really working but I do feel tons better today. Of course that is not for everyone. If you can see a pain management clinic I would say go for it. They can give you techniques to deal with the pain.

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

 

 

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