extreme pain & pain meds

[cathyst]

I am increasingly having more and more pain.  Just turning my head or moving my arm can really hurt.  It feels like my muscles, ligaments and tendons are all hurting.  It is embarrassing if I am out, because I find that I groan with every movement and sometimes don't realize that I am doing it out loud.  People around me in the stores must think I am nuts!  Top those with pain, could you describe it to me?

At this point, I am taking Darvocet.  Do you all have any suggestions of a great pain medication?  I have always been very conservative in taking narcotic pain medication, but at this point I feel like I don't have a choice.

Thank you for any input~
Cathy

[cathyst]

Thank you all for your input.  The pain is a daily issue and becomes unbearable at times.  I  hoard any pain killer I can get my  hands on.  I have some vicoden from a neuro a while back, very few vicoden from a recent tooth abscess and darvocet from my GI dr., to help with pain with digestion.  At this point, the digestion issue is still a problem, but the pain I had when he prescribed the darvocet is no longer an issue.  I don't want to lie to him to get the darvocet refilled..

Here is my problem.  None of my doctors, including neuros, prescribe pain medication.  They won't touch the pain issue with a ten foot pole.  All they say is to go to a pain management doctor.  The last thing I want to do, or am up for, is more doctor appointments.  

My insurance company told me to contact a pain management place close by.  I called them today to find out they don't prescribe any medication!  I thought I was hearing things.  They basically treat pain with botox and epidurals.  The receptionist said it is because of all the drug abuse that is going on with prescription drugs.  

Is there anyone in S. Florida, dealing with a lot of pain and seeing a doctor that prescribes pain medication???  I know this is a long shot, but thought I would throw it out there, just in case.  I really, really, really do not want to go to a cut rate place, with a doctor who does not know what he is doing, just to get the medication that I need daily.  SO frustrating!!!

Thank you for any and all suggestions!
Cathy

[Heiferly]

A few points of clarification from your friendly forum co-CL!  :-)

It was Kav31675 that posted re: having had a car accident in 1998, not the originator of this thread, cathyst.  You can tell who is "talking" in a given post by looking at the top of the post at the name linked in blue where it says "by [Whomever]."

MedHelp terms of service does not allow personal information such as email addresses to be shared over the public forums.  This is really for your own protection as posting your email address in this way would make you highly susceptible to spammers.  As you can see above, MedHelp automatically ****s out email addresses if you try to post them.  If you want to contact other posters privately within MedHelp, you can use the private messaging feature; just click on the person's username (again, this appears in blue as it is a link) to go to their profile page and click "send message" from there or hover over their username with your cursor and click on "send message" in the drop down menu that appears.  Note:  The "leave a note" feature is not private, but is visible to anyone who visits a user's profile page.

Best,
-Heiferly.

[kadams36]

I am tryin to get a hold of you..with your POTS and other information you sound just like me and others....it sounds to me like you have Chiari and/or EDS...I think possibly you have been misdiagnosed like many of us...and your biggest clue is the car accident in 98 ..contact me  ***@****

[Kavbear]

I hurt my back in a car accident in 1998 and have taken every blasted pain med you can think of, I am at the point they are making things worse (I thought so but my doctors here need the money so they disagreed I got confirmation at the Mayo that they are sure I have "Hyperalgesia", so I am tapering off)
It sounds like you know your body, is it Fibromyalgia/nerve pain? Opiates don't help much for that.
If you are hurting so badly and are taking Darvocet, you are already taking opiates how long have you been on the Darvocet? Our bodies get used to taking opiates and need more; do you think you are at that point or do you think its not strong enough because you smartly have been conserative?

[laurab2818]

Hope this is helpful.  I know what it is like to live with severe pain. I have POTS, fibromyalgia, and chronic fatigue syndrome and have tried lots of pain meds over the last 13 years.

For the last six months, I have been using Fioricet for migraines, tension headaches, and for pain in general.  It has worked better than anything else I have ever taken (Flexeril, Baclofen, Ibuprofen 800, Tylenol w/Codeine, Maxalt, and maybe others I have forgotten....).  I usually need pain meds roughly 3-4 days a week.    I am so glad to finally have something that works for pain after searching 13 years!  I also take Nortriptyline at bedtime for sleep and chronic pain. That has been helpful and I still take it. It just isn't enough.

How are you doing?  Hang in there.

Laura

[auntissie]

I have allot of pain issues too.  I also have Ehlers Danlos, Fibromyliga and osteoarthritis.  At the moment I'm dealing with a badly broken leg/foot.  Allot of the pain meds made my POTS worse.  Finally, after allot of trial and error, I've got it figured out.  I use Tramadol with a Bentyl.  The Bentyl is a muscle relxr.  The combination seems to be helping with the POTS too.  If I don't take the Bentyl with the Tramadol, it mades my POTS worse.  Don't know why it's working, but glad it is.  I have the same type of pain, every movement hurts.  Getting up after having sat for very long --- Is the worst.  Hope this helps you too.

[Heiferly]

I take Tramadol PRN as well for my day-to-day pain needs.  I have also taken narcotics for short periods of time when something exceptional was going on (injuries secondary to syncope, surgeries, kidney stone, etc.): vicodin, percocet, and oxycodone.  Through IV in the hospital I have had morphine, dilaudid (supposedly 9x as strong as morphine when administered intravenously; same does not hold true for oral administration), and toradol.  On a couple of occasions I've had rxs for other NSAIDS such as naproxen (Aleve) or ibuprofen 800 mg.  All that being said, it's the Tramadol that I take regularly, but I openly admit that it basically just "takes the edge off" for me, and when I have more severe pain, I will resort to narcotics for short stints if the docs think that is appropriate and I feel it's needed.  

I highly recommend that in addition to posting here, you talk to the folks over in the pain forum if you haven't already.  They're MUCH more versed in these meds, (and some non-pharmaceutical options as well if I recall correctly).  I've asked for advice over there myself and they are VERY helpful and knowledgeable.  

http://www.medhelp.org/forums/Pain-Management/show/53

You may want to mention to them that dysautonomia is often paired with neuropathy, as that may help them to weigh different options of what may work on your pain.  Have your doctors told you whether they think the pain is neuropathic in nature?

[CHRISTYDRAKE]

My son takes Tramadol and tolerates it just fine.  He is also allowed up to 600 mg of ibuprofen at a time.  These don't give him any other problems for the POTS.