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mzjellofluff
New Member


Date Joined Jul 2010
Total Posts : 3
   Posted 7/10/2010 2:26 PM (GMT -7)   
Hi there... i'm new and there isn't a category/forum specifically for my disorder on here. I have ehler's danlos syndrome and i do participate in a forum elsewhere for it. Trouble is that the forum is UK based and the meds are different and you are not legally allowed to ask about or post about dosages there. nono

so..

i suffer from chronic pain in all manner of body parts... joints and spine mostly, with some high degree of muscle pain in specific places (like my back).

recently i had surgery and was on dilaudid, no probs. Switched to the samples of tramadol i had a week or so after surgery, again no probs. Went to get a script and fill it and BIG prob... my ins doesn't cover it. So, until i see the pain management doc for samples or a different drug the GP put me back on dilaudid.

i've had no trouble with it per se, but there has been this wicked intense anxiety ever since i started back on it... and i am getting the idea it is some kind of withdraw when the drug is wearing off. I don't take much but the anxiety is impressive.

is this possible? There are many reasons i might feel anxious (broke, sick, pain, lonely, etc etc) but this is outside my "normal" range. It's either a result from the surgery or it's the dilaudid.

any thoughts?

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 7/10/2010 3:39 PM (GMT -7)   
Mz JF,

Hey.... welcome to the board. Sorry you are dealing w/ pain and anxiety issues, though. Re: EDS, I don't know that much about it, other than it seems that many people who share my main health issue (Dysautonomia/POTS) also have EDS. So, I have heard about it... I have widespread chronic pain, too.

Re: your question re: dilaudid and anxiety and so forth - how long ago was your surgery? (Just wondering how long you've been on the dilaudid). You know, narcotics can cause lots of symptoms and they can increase anxiety - so it definitely could be what's causing you to feel the way you do. Or - it just could be everything else.

The thing w/ short acting meds like dilaudid - while it is an excellent pain reliever... but it only lasts for a few hours. So, your body is going through "highs and lows". When it's in your system, it works great for pain and such, and then it wears off - and your body is looking for the next dose. Do you think you are going to be on narcotics long-term? If you are, I would definitely recommend looking at finding something long-lasting, that doesn't put your body through so many peaks and valleys.

Side note, I've been on every medication there is.... and don't mean to sound negative re: meds - they are a MAJOR part of my chronic pain management. That being said, I've had lots of side effects, too... so I just encourage you to work to find the "right" medication for you. Anxiety, regardless, is really hard to deal with.. I definitely know!

Take care, and - again - welcome.
--Tina
Main Health Issues: Dysautonomia/POTS; CFS/Fibro; Chronic Hypertension; Hypothyroidism and Hypoadrenalism; Mixed Sleep Apnea (on BiPap); Depression/Anxiety; Vitamin D Deficiency.

Pain Issues: MANY; multiple back issues (cervical/thoracic); migraines; severe carpal tunnel syndrome; widespread joint/muscle pain; nerve pain in hands/arms/feet. Treatments - multiple meds; injections; nerve blocks; have had intrathecal pain pump trial (successful, w/ Dilaudid); eventually will have it permanently implanted.

MAJOR surprise - Pregnant, w/ twin little girls (after six boys). Due Sept, 2010. Praying they are healthy. YES, you can have chronic pain AND have a successful pregnancy - not easy, but it can be done. :)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 7/10/2010 5:47 PM (GMT -7)   
Hi MzJello, I too would like to welcome you, to Healing Well's chronic pain forum. Very sorry that you have to be here, but glad that you found the forum. I have heard of your condition, but I do not know much about it. I will do a google search on it and read about it so that I know more in the future what you are talking about, lol.

I have to agree with what Mom wrote about the Dilaudid. Have you checked with the pharmacist or read your print out? You may also look it up online for adverse reactions. At least by asking the right person or reading about it you can get the correct info rather than asking people questions about drugs that they are not qualified to answer. I do hope you will hang out with us and continue to post. With it being a weekend sometimes things get slow at the forum.

Take care and welcome aboard.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


mzjellofluff
New Member


Date Joined Jul 2010
Total Posts : 3
   Posted 7/10/2010 5:49 PM (GMT -7)   
Thanks for responding! :)

I had surgery in May.. and although the pain was remarkably better (both the chronic and the incidental) I didn't feel much from the dilaudid. I switched to tramadol (tramacet version PRN up to 4x per day) and was still doing ok... it was when I had to go back on dilaudid that I began suffering this anxiety. I need *something* for pain or I can't function some days. I fell last year and smashed my foot real bad. Because of the Ehlers it never went back right and walking can be excruciating.

i think you are 100% right.. i just hadn't noticed the trend. i was down to taking it twice a day and i can see how the anxiety is affected by that. Good thing I am seeing the GP on Monday at least.

i think i am prone to anxiety right now bc I have been out of work due to the surgery and so things are stressful... it's just this anxiety was over the top even for me.
- - - - - - - - - -
Ehlers Danlos Sydrome III, Spondyliolysis/Spondyliothesis L4/5, Herniated disc, bulging disc, node on a disc, impinged S1 nerve, sciatica, SI joint issues, nerve damage in left foot (due to fall with break and permanently damaged ligaments), chronic nerve and muscle problems in both shoulders, atlo-axial ligament instability with intense pain in that region constantly.
I've shattered my pelvis, thrashed my tailbone and bladder as well.

I also seem to be prone to tumors. Just had surgery for lesions on my uterus. It is the 3rd time I have had tumor surgery for differing areas of the body.


mzjellofluff
New Member


Date Joined Jul 2010
Total Posts : 3
   Posted 7/10/2010 5:52 PM (GMT -7)   
thank you :)

To be honest... researching online and posting the question is helping me ease the anxiety... Got two more days before I can see the GP and my PM doc cancelled my appt until the 27th shocked
- - - - - - - - - -
Ehlers Danlos Sydrome III, Spondyliolysis/Spondyliothesis L4/5, Herniated disc, bulging disc, node on a disc, impinged S1 nerve, sciatica, SI joint issues, nerve damage in left foot (due to fall with break and permanently damaged ligaments), chronic nerve and muscle problems in both shoulders, atlo-axial ligament instability with intense pain in that region constantly.
I've shattered my pelvis, thrashed my tailbone and bladder as well.

I also seem to be prone to tumors. Just had surgery for lesions on my uterus. It is the 3rd time I have had tumor surgery for differing areas of the body.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 7/10/2010 6:00 PM (GMT -7)   
OMG, oh wow I do hope your PCP will help you out until you can see your PM dr. I realize you are out a good 6 weeks since surgery, but you do need something for pain. You did not say what mg of Dilaudid you are on or else I missed it, lol. Have you tried cutting the Dilaudid in half to see if this will perhaps help with the anxiety? I am allowed by my PM dr to cut my Dilaudid in half. I have 8mg that I am allowed every 6 hours. So, sometimes when I cut it in half I take half then three hours later take the other half, she does not have a problem with this because I am staying in the same dosage schedule. Sure hope you can get some relief. Take care.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 7/10/2010 6:17 PM (GMT -7)   
Hello,

Welcome to the forum, you will find a whole bunch of amazing people here!! That is wonderful, but it is also very sad that so many people suffer from CP! I am sorry to hear that you are having these problems!! The really bad thing about short acting pain meds, like some have said already, is you seem to be chasing your pain and never really get on top of it! I am not familiar with Ehlers Danlos Sydrome III, but I do have terrible chronic pain from my lower back problems. Also, have nerve impingement. I did not really start getting some relief until I went to a sustained release medication. Still had pain but was able to cope with it! Have some new stuff going on now, so have some other issues causing pain and just making me feel horrible... but that is another story!!

Anyway.....just wanted to say hello and welcome to our "family"!!

Hope you can get something that will help you to get some control back!!

Take care,
Beckey

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 7/10/2010 6:37 PM (GMT -7)   
Hi and Welcome to the family!

I think you've already found out one of the main reasons most of us are here...the support is amazing! Just talking to others is so helpful and can really ease the stress. The unknown is way harder to deal with that something you can at least understand.

I had no idea what Ehlers Danlos Syndrome was so I looked it up in case others might want to read about it. This must be very difficult to live with and manage. I sure hope you get some relief fast.

Here's a bit from one site I found and the link to it also...
Chutz

www.ednf.org/index.php?option=com_content&task=view&id=1348&Itemid=88888969


Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue.
If you're going through hell, keep going.

Winston Churchill

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 7/11/2010 6:59 AM (GMT -7)   
I would like to add my welcome to you for joining us here in the chronic pain forum. 
 
Anxiety is such a difficult thing to live with, but posting here does help because it is a release somtimes and gets your feelings out and on the table, so to speak.
 
I have been a member for years and I come almost every day to be with my friends and read posts and share with others how I am doing. 
 
I hope you will continue to post and let us get to know you and you can get to know us.  This is the best collection of people in the world,  so supportive, caring and kind.  You will see what I mean in very short order.
 
God bless you and may you have a low pain day.
 
Lindaloo
Co-Moderator Chronic Pain and Fibromyalgia Forums
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 7/11/2010 7:22 AM (GMT -7)   
Hi Mz, I just wanted to say Hello and welcome to our family. I am sorry that I am not familiar with the things you have going on but you have already gotten some great advise. The people here are wonderful. I hope you keep posting and keep us updated on your situation. I do know that finding the right combo of meds is very important in fighting our pain. Once again welcome to healing well!
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 7/11/2010 12:42 PM (GMT -7)   
Hi
I wanted to add my welcome as well. I am so sorry that you are suffering so much. I hope your anxiety has eased up a bit this weekend.
How old are you? Do you have a family? Where do you live?
I hope you are able to get the correct meds for your pain when you see your doctor. I know it is diffcult living with chronic pain. i am just trying to come to terms with accepting my own pain and it is not an easy task. It takes all one's energy to get thru the day.
You will find the people here are so supportive, never judgemental and always there to listen.
I have made some wonderful and very special friendships here.
 
I hope you are doing a bit better today.
 
Take care
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since 2000.
 
           

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