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I get so tired of dealing with the stigma and misconception about chronic pain
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SAgoddard posted:
I get so tired of dealing with the stigma and misconception about chronic pain. People should not have to go through life in this kind of pain, day after day, year after year. If it weren't for my husband and my kids I'd throw the towel in and just give up.
I've been dealing with chronic pain issues for at least 15 years. I have degenerative disk disease with spinal stenos is in my neck. I've had 2 neck surgeries and now have plate/screws from the middle of my back to the top of my neck. As a result of the nerve damage I've developed pherpherial neuropathy in both arms and if that isn't enough I have Rheumatoid Arthritis and Lupus on top of it all.
People look at me and they see a healthy individual. But no one knows about the hell that is my life. I had a wonderful pain management doctor but had to move to another state and have found no one here that is willing to help. I am a functioning member of society and I do not deserve to be treated like a criminal. I work full time because I have no other choice AND I'm not ready to give in to full disability yet.
When I moved here and had to start looking for a new doctor I had to go through the interrogation and being treated like I was drug seeking and it just makes me so mad and so frustrated. This isn't a choice but it is my life. My job suffers, my marriage and my family. I have not slept more than 2 hours at a time in the past 2-3 weeks. When I am trying to sleep I get "Charlie horses" in my spine and wake up crying and at times almost screaming because of the intense pain. The depression has gotten almost out of control.
I realize no one can help me with this I just needed some place to vent and possible find someone that knows this hell.
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tuloud54 responded:
You're not alone. I'm 57 and totally disabled. Way too young to feel as old as I do. Short story is in 2007 my left hand got painfully cold. Took Darvocet 4 times a day and though uncomfortable,still able to work In 2008,1 year later the coldness went all the way up to my left shoulder. Darvocet didn't touch this pain. The last day I worked was May 18,2008. Now on ssdi and am more fortunet then most but know the feeling of seeking drugs. I was blessed with a fantastic Family Dr that knew me well enough to know when I said I could not work he never doubted it. After 2 years of pain mgmt with him,he suggested pain mgmt. At the time I was on 50 mcg Fentayl and 5 mg percocet 4 times a day, Went to pm dr and he took percocet away and just wanted to try the patch alone. I thought this guy specializes in pain so I'm for whatever he wants. Big Mistake. After 2 months I was way worse but this Dr said give it more time. My patches were not lasting 3 days and with no backup,ouch,every month. I stayed with thid idiot for a full year because I really don;t want to dr shop. I now have another dr that the first day he saw me put me on 2 day patch schedule. Makes a world of difference in my life. Just knowing you are going to go wo meds for even a day can ruin youe week if you know that it's coming. Am now at a stage to get a pain pump in the next couple of weeks.Just waiting for the surgeon to schedule me. I'm just an old hippy and had my share of fun. This is not fun trying to beg,literally beg for pain relief. I would rather die on the surgery table then exist the way I have. Not giving up and standing up for yourself will work out. So sad that many people suffer so some punks can get high. Never gotten high on my meds but why would I. Pain is a [itch but do not give up. Keep searching and someone will listen. You don't ever quit because you deserve better. Thanks for venting and letting me rant.
 
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77grace replied to tuloud54's response:
Hi,
Woiw,it sure sounds lke you too have been through alot!!!
I'm glad you finally found the right pain Dr. for you,that makes a ig difference!Pleae don't be a stranger ,I'm here if you need to chat!!I also suffer from alot of neck and back pain!
Take care,Blessings 77grace
 
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bpcookie responded:
Ive been going through chronic back, neck and shoulder pain for about 6 years. As you all know, chronic pain is constant.

Ive been to many different pain specialists, many different physical therapists, been through all kinds of treatments, tried different muscle relaxers, pain meds and spent all sorts of money on things that didnt work. Dr.s gave up on me. The only thing that I had to help with the pain was Hydrocodone, Tramodol and Methocarbamol. I make a bottle of each last for about 4-6 months. The FDA makes it hard on the Dr.s and many Dr.s dont like to prescribe pain meds.

A few years ago I was seeing a pain specialist who could only offer me prescriptions because I had tried everything else. After a years time she sent my records to my family Dr. and told me to get the meds from them. 6 months go by, I see my Family Dr., they prescribe my meds but tell me that they dont like prescribing those meds because of the FDA BS. So 6 more months go by and I run out of meds. I also developed another pain issue that is 10 times worse than my other pain issues. I end up going back to my pain specialist in order to get my prescriptions. My pain specialist, the one that I had seen a year before, comes into the room and starts treating me like Im a street druggy. She said "WE WILL ABSOLUTELY NOT, GIVE YOU ANY PAIN MEDS". I was so humiliated, embarrassed, shocked, horrified, etc. I was desperate to be out of pain. I just broke down crying right in front of her. It prob. made it look like I WAS a druggy needing a fix. I bawled all the way home. I bawled for hours.

This is so unfair to us. We need our prescriptions to get through our daily lives. We get treated like druggies, we get humiliated, we get kicked when we are already down.

This is ssssoooo wrong!!!! The FDA needs to fix the problem that they have created.
 
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bpcookie replied to tuloud54's response:
Hello Tuloud, Your right, were literally begging for pain meds. We are forced to beg, which makes us look even worse.

If I were really a druggy just looking for a fix, I sure in the heck wouldnt go to a Dr. to get my fix. I would be getting it off of the streets, like most druggies do. Im sure its cheaper to get from the street too.

Im so glad that I saw this post. I know that Im not alone in this frustration.
 
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Ilbeityetanotherpainpatient replied to bpcookie's response:
What do y'all do when you have exhausted ALL FORMS OF NON-Medication treatment? I'm fortunate to have a pain doctor willing to write the scripts (for now). But that has gone on for 3 years. He is bound to make more $$$ on those patients who benefit from other things (shots, implants, etc). From me he writes scripts, gets paid a small amount to see me. I'm very fortunate to have this doctor, but wonder what to do if it doesn't last? I just want to be prepared cause its happening more & more like you describe. I have been in chronic pain for 8 years & had only 3 P.M. Doctors (the 2nd one was a bust-my GP yanked me out of there cause of his poor treatment).

I'm sorry that you all are having so much trouble.
 
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bpcookie replied to Ilbeityetanotherpainpatient's response:
Hello Ilbeityetanother, I totally understand your fear. I always feared that one day my Dr. would refuse to give me pain meds. or think I was a druggy. That day came and it was horrible. But it doesnt happen to every one. Some ppl have some wonderful and understanding Dr.s So you may be in luck and your Dr. may be one of the good ones.

If ever your Dr. stops giving you the meds you need, find another Dr. Dont give up. Take care of yourself.
 
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77grace replied to bpcookie's response:

Hi
Well,I'm sorry to hear you are going through such a hard time,how long have you been on these meds???I forgot what you said is wrong with you?Also did you say that you run out of meds????I'm just trying to understand why your Dr. would not give you any pain meds!Did you misuse them before and maybe she is upset about that??If you have a real health problem I don't understand!
Hope things get better for you,77grace
 
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bpcookie replied to 77grace's response:
Ive been taking them for about 6 yrs, the same meds, the same strength and the same dosage. I make each bottle last 6 months because I only take them as needed. I understand that these meds can be addictive, so I try to avoid taking them unless I really need to. So I have never misused them or gave some to anyone, so I have NO clue why my pain specialist had such a fit.

I have neck pain, shoulder pain, muscle pain that follows both sides of my spine all the way to my lower back, the muscles under my shoulder blade hurt, I have tail bone pain and I have Lichen Simplex Chronicus Vulva. The LSC is a burning pain of the entire vulva area, it travels down my buttox to my inner thighs. So everything that I do hurts. Even laying down hurts.

Many years ago I finally accepted the fact that I will always have back, shoulder and neck pain. I figured I will just have to live with the pain and take my pain meds when needed. When I developed the LSC, it became impossible to accept. I wake up every day knowing that I will be in horrible pain, all day long. Sometimes its hard for me to get out of bed because I just want to give up. I go through depression at times and there have been times that I wouldnt have cared if lighting struck me dead.

I switched pain specialists and found one who is trying to help me with the LSC pain. I had my Pudendal nerve burned and Im hoping that will help. If it doesnt help, then I will be back to being depressed again.

Thanks for replying Grace. You seem like a very kind person.
 
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bren_bren replied to bpcookie's response:
Hello BPCookie,

I'm curious as to how the pudendal nerve burning went? Did you find a doc who severs the nerve? Or does he do an ablation? Do you also experience pelvic floor tightness?

I guess I'm asking because I may have to resort to something along those lines in the future. One doc said I had pudendal neuralgia and that was after a diagnostic nerve block.

Did you have a diagnostic procedure done before the PN "burning"? I've shied away from the "severing" (which may be different) because of the risk of incontinence and sexual dysfunction. But who enjoys sex anyway with chronic pelvic pain?

I'm sorry to see you have to deal with this. I hope you have a pain-less day, B
 
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bpcookie replied to bren_bren's response:
Hello Bren Bren, They could only do one side of the pudendal nerve. Also they couldnt do a Pudendal nerve ablation because its too dangerous, so they did a Pudendal pulse RSA (I believe thats what it is called) which is safer but should have the same results. They told me that I wouldnt notice anything for about two weeks. So far I havent noticed a difference. After to having the left side done and waiting two weeks after that, then I should know if it worked or not.

My Gyno told me that the left side of my pelvic floor is tight. My health ins. wont cover Pelvic Floor Therapy.

There are also operations that can be done that is supposed to stop the vulva pain. But they could also cause more problems. One operations is to completely remove the vuvla nerves. Very scary stuff.

So you suffer from vulva or vaginal pain? What is your diag.?
 
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TBIsurvivor50 responded:
Chronic pain is an invisible disability, but so is a mild traumatic brain injury with back pain. My head injury was a closed injury, and my short term memory is greatly affected. I am not able to work, DO rely on govt assistance, which I never believed I would, but there is a stigma to it as well. Funny thing is, when I worked, I was a local advocate for the disabled! Without insurance or Medicaid, I have nowhere to go to receive pain management.
All I have to say, is that life can throw you curve balls when you least expect it.
 
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bpcookie replied to TBIsurvivor50's response:
TBISurvivor, your last sentence is very true. I told my daughter to go out and have fun, do the things that you want to do, go places, see things, because you never know what may happen.

Chronic pain can put limits on your daily life. I am glad that I did so much before this pain started.
 
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Anon_2912 replied to bpcookie's response:
You can do the keigel excersices for the pelvic floor thearpy.

You can even google it. I went to a pelvic physcial thearpist & she showed me the keigel excersices that really yoiu don't need to see her for.

It helped me...
 
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annette030 replied to Anon_2912's response:
These are great exercises, but you must continue to do them forever to maintain any positive effects. I think that is worth it if you are suffering and they fix it. Don't need drugs or surgery.

Take care, Annette


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