What's Your Damage?

Recommended Pharmacies on Pharmacy Reviewer

Dear @Binky, I am so sorry you had to go back to the hospital but glad that you did. Definitely made the right call going to the ER. Now a blood clot and an pneumonia! Damn girl you have had it rough as you are fighting this damn cancer. I am not sure but maybe the radiation lowered your immune system a bit. Stay strong Binky. One hurdle at a time.

DD's knee surgery went amazingly well. Afterwards she was barely in any pain and did not even need crutches. Her knee should be good for 2-3 decades. I enjoyed seeing her, her roommate, and her apartment. I miss her now that I am back home which is a step up from being constantly worried about her. As Binky knows she was a bit of a hell-raiser.

Thanks Binky for taking the time to keep us informed. Sending you strength and love.
 
I have sarcoidosis which is a crazy autoimmune disease that they cant cure. It attacks my lungs and lymphnodes. It can attack skin,eyes,lungs, liver, a few more more things. They don't even know how we get it. Im the only one in my family that has it. It really just makes me tired, I used to get pneumonia very often. I have had covid 3xs.
My source of pain is coming from my back, I haven't had my mri yet so I don't know what is wrong. They gave me 4 big shots in my back and I screamed and cussed like alitte kid. I know that is crazy but that shit hurt me. Those shots lasted 8months. Now its hurting again and they want to do that dam epidural thing. HELL NAH, I will not do it. I'm sorry I would do the 4 shots again. My backs bothering me that bad. But that methadone blocks numbing effects and I don't think I want to experience that. My daddy told me he had 4 and they didn't help him.(epidurals) I have to start PT on Monday and I pray it helps. @Binky Im sorry hon. I didn't know you were going through a rough time. I pray you get better soon 🙏.
 
I have lived with right sided head nerve pain all of my adult life. Neuralgia was the only diagnosis I received for 20 years. Neuralgia was so broad of a diagnosis. Neuralgia by definition is
  1. intense, typically intermittent pain along the course of a nerve, especially in the head or face.
Doctors told me it was "all in my head". Yes it is literally in my head, but what the professionals were saying was it wasn't "real". Well doc I can attest to the fact that I have daily pain sometimes lasting for hours and/or days. It sure feels like real pain to me! Plus I have terrible migraines.

So fort 20 years I went to a lot doctors and Neurologists with no success. Found an ENT and had two surgeries for reffered nerve pain with minimal relief.

After decades of living with this nagging daily pain later I was diagnosed with Atypical Trigeminal Neuralgia from an ENT. Who referred me to a Brain Surgeon who suggested Gamma Knife radio surgery which is safer than brain surgery. So I decided to have had 3 more surgeries which were not cheap: $100K each surgery and the recovery for the last two surgeries was horrific! I had some relief as the radio surgery interrupts the pain signals by scarring the nerve. But nerve cells grow back so any relief from this type of surgery does not last and there is nothing more the medical establishment can do for me.

So here I am post 5 surgeries and I still have daily pain. I hope to find some relief here. Life with pain is hell!
 
Seeker said:
I have lived with right sided head nerve pain all of my adult life. Neuralgia was the only diagnosis I received for 20 years. Neuralgia was so broad of a diagnosis. Neuralgia by definition is
  1. intense, typically intermittent pain along the course of a nerve, especially in the head or face.
Doctors told me it was "all in my head". Yes it is literally in my head, but what the professionals were saying was it wasn't "real". Well doc I can attest to the fact that I have daily pain sometimes lasting for hours and/or days. It sure feels like real pain to me! Plus I have terrible migraines.

So fort 20 years I went to a lot doctors and Neurologists with no success. Found an ENT and had two surgeries for reffered nerve pain with minimal relief.

After decades of living with this nagging daily pain later I was diagnosed with Atypical Trigeminal Neuralgia from an ENT. Who referred me to a Brain Surgeon who suggested Gamma Knife radio surgery which is safer than brain surgery. So I decided to have had 3 more surgeries which were not cheap: $100K each surgery and the recovery for the last two surgeries was horrific! I had some relief as the radio surgery interrupts the pain signals by scarring the nerve. But nerve cells grow back so any relief from this type of surgery does not last and there is nothing more the medical establishment can do for me.

So here I am post 5 surgeries and I still have daily pain. I hope to find some relief here. Life with pain is hell!
Click to expand...
I get bad headaches but they're actually few and far between. I don't know how I could live if I had to deal with that constantly.

I hope you find some relief here as well. Stick around and you will... 🙏
 
seashells said:
@notcharlotte Ty, Yeah, I can't remember the medical term for the shots but that methadone blocks numbing agents so I feel everything. I don't know what to do.
Click to expand...
Is there any way to go to a shorter acting opiate for a while that wouldn't have that same numb-blocking effect? Or do all opioids do that?

Back pain is another thing I just don't know how I could continue to live with. I get small bouts of it as a result of physical activities, but it's always gotten better with self medicating and icing, etc.

I feel awful, reading this thread about what folks endure in their lives. 😰 I am extremely thankful for my own good health...
 
@seashells , with methadone my understanding is that what can be used for acute pain management is either more methadone, or taking like a 3 day break from the methadone to allow the other pain/numbing drugs to work. I think anyway, not 100% sure that taking a short break would work and with a methadone break there may be withdrawal issues?

You need to talk to an anesthesiologist as they would know the most I would think. Also the drugs they give us during a colonscopy could work for you and these back pain shots. The medical term is something like Local-MAC. I think the drugs used in these are more like extreme benzos so don't think methadone would block. Anyway just some ideas. It's so annoying to me that the medical professionals are often so unhelpful. You would think they would like a challenge.

Another thought is your upcoming MRI may provide a more specific back location that is causing your pain. This could result in needing only 1 or 2 shots. So less pain.

Here's some info on Local-MAC

www.verywellhealth.com

What You Should Know About Conscious Sedation

Monitored Anesthesia Care (MAC) or twilight sleep is a type of light anesthesia used for minor procedures. Learn how the process is completed.
www.verywellhealth.com www.verywellhealth.com
 
Last edited:
@Seeker , I am familar with your condition and it is brutal. I have had maybe 2 episodes in my life, although I believe mine was more like an occipital nerve pain shooting from the bottom of my left side/head up and accross to the right side. When I had those episodes, I would pretty much take everything I could without accidently committing suicide and still ending up lying on a hard very cold ice pack. Worse pain than labor. And you have a pain worse than this everyday. I am so sorry.

You have had 5 surgeries?!? Wow, noone can accuse you of not trying to fix this pain. Meaning doctors should be willing to script you pain meds. We have had some members on this board with your condition but I don't think any are currently active.

I do know that nerves grow back when they are severed but I don't think the same is true for when they are bruised. FIVE surgeries is SO many. Were they all with the same surgeon?
 
Last edited:
Thank you for your concern Blackbird123. I had two surgeries with an ENT and three with the same neurosurgeon. The ENT has since died and the neurosurgeon / oncologist prescribe a lidocaine and ketamine solution used as a topical anesthetic. Doctors are not willing to prescribe any pain meds, that's why I'm here. Hoping and praying to get some relief!
 
Blackbird123 said:
@Seeker , I am familar with your condition and it is brutal. I have had maybe 2 episodes in my life, although I believe mine was more like an occipital nerve pain shooting from the bottom of my left side/head up and accross to the right side. When I had those episodes, I would pretty much take everything I could without accidently committing suicide and still ending up lying on a hard very cold ice pack. Worse pain than labor. And you have a pain worse than this everyday. I am so sorry.

You have had 5 surgeries?!? Wow, noone can accuse you of not trying to fix this pain. Meaning doctors should be willing to script you pain meds. We have had some members on this board with your condition but I don't think any are currently active.

I do know that nerves grow back when they are severed but I don't think the same is true for when they are bruised. FIVE surgeries is SO many. Were they all with the same surgeon?
Click to expand...
Actually I think it's @Azzamean who has a similar condition. I do know he's mentioned that he is scripted some RX meds but not enough, which is typical. At least he does get something tho.

I'm surprised you wouldn't qualify for pain management. Where I live they do RX pain meds for some folks with intractable pain. It sure seems to depend on what part of the country you live however. It's completely inconceivable that any doctor thinks this condition doesn't deserve fair amounts of pain medicine!!

You'll find some help here. Just stick around!!
 
@Seeker, I second what @jaders has written, including the part about sticking around.

Have you asked your neuro to refer you to a pain mgt doctor? There are a few of us here on the board who do see pain mgt doctors and do get scripts.

If nothing else, talking about this will help your post count and get you into the sr section faster.
 
Seeker said:
@jaders Yes I have intractable pain every day. Cannot find any doctor empathetic to my plight. I’m located in New England.
Click to expand...
Wow. That is truly mindblowing. I’m so sorry…😔

I assume you have approached regular pain management clinics? Like I said - I know of two folks who go to pain management and get prescribed some opioids. One even has a pain pump installed under the skin. She has a severe form of a genetic illness tho. But her doctor has been having to jump thru some hoops related to the high doses of opioids that he prescribes. My friend had to go to another doctor for a “second opinion” against her wishes - just as a form of oversight over her PM doc. It’s like the DEA have become the nazis of the medical world. 🤬

When you’re finally able to obtain help thru the “backdoor” here - don’t you wish you could go in and tell these lousy effers that, thanks for everything but you no longer need them. 😏
 
@Seeker well that sucks that even with a more than justified reason, you cannot find a doc to script you ANY meds.

I don't know if there is a difference between a pain clinic and a pain mgt office. It's just a name really. Let me think about it a bit.

Meanwhile, you could maybe think about finding a different neurosurgeon and a different pain clinic/mgt place. Neither of these guys are providing you with any help. Make sure to get copies of your medical records if you do decide to switch docs.

One way to find out who scripts pks in your town is to ask the pharmacist or one of the techs who works there. Now that is an extremely sensitive thing to do/ask. But maybe if you have a friend of a friend of one the techs who works behind the counter.

Regardless odds are you would not get scripted enough to cover you 4 every day. Good that you are here. Keep posting.

Edited to add -- keep posting anywhere on the board. It all counts. Sometimes one gets tired of talking about how screwed one is chronic pain wise. I alway say denial is one of my favorite pain mgt tools.
 
Last edited:
@Seeker have you tried to bring this up with your pcp and see if they can help with at least a referral to pain management? it's crazy you can't find one. otoh, that's why most people are here: doctors refuse to address pain. after 5 surgeries you seem to be an excellent candidate for some help. however all the docs are afraid to prescribe even though the cdc backed down somewhat on their statements about chronic pain.
 
Alls you heard and do hear in the news is that doctors are overprescribing pain medication and that’s why we have an opioid epidemic . Well I’ve never met one doctor like that. I had a neurologist stop my prescription for lidocaine which is a topical anesthetic and that was the only prescribed relief I had at the time. So I’m afraid of doctors because not all of them have empathy. So we do what we need to do to get some relief.
 
You must log in or register to reply here.
Back
Top
✖
AdBlock Detected

Ad blocking browser plugins interfere with some features of this forum. For the best site experience please disable your ad blocker.

I've Disabled AdBlock    No Thanks