No where to turn: Hello, I've been on this site... - Pain Concern

Pain Concern

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No where to turn

Jame5263 profile image
10 Replies

Hello, I've been on this site just reading posts for a long time now. I've never posted anything as I have so many issues and don't know how or where to begin. Lately I've felt so horrible that I honestly feel like giving up. I have absolutely no quality of life and don't want to suffer any longer. I'll do my best to keep this short and to the point. I'm a 37 year old female. Diagnosis include : Asthma (severe), environmental allergies (also severe), type 2 diabetes (uncontrolled), spondylolthesis L5S1, degenerative disc disease, Nueropothy, sciatica , pcos, non-alcoholic fatty liver, high cholesterol, high triglycerides, high blood pressure, elevated liver enzymes, bipolar disorder, severe depression, panic disorder, generalized anxiety disorder, ptsd, chronic constipation, acute pancreatitis, chronic nausea and vomiting ( reason unknown), I believe I named everything. Now for my medication list: promethazine 25mg prn every 6 hours, zofran 4-8mg prn, gabapentin 300mg tid , percocet 10/325mg every 4 hours, oxycontin 60mg tid, fentanyl 100mcg every 72 hours, Zoloft 200mg , effexor 75mg, vistaril 50mg tid, benadryl 50mg prn, xyzal 5mg, fenofibrate 160mg, prevastatin 40mg, losartan hct 100/12.5mg, verapamil 100mg, clonidine 0.1mg tid, omeprazole 40mg, tizanidine 8mg tid, requip 2mg, magnesium 400mg, albuterol inhaler prn, Advair 500/50 2 puffs daily, novalog insulin sliding scale, toujeo 15 units daily. Now the problem that's bothering me the most right now is the back pain, and the nausea and vomiting. Every single day I feel extremely sick to my stomach. So bad that I'm usually very dizzy. Between my stomach and back pain, I'm on a level 5 out of 10 pain scale. It literally debilitates me and I spend every day laying down. Every doctor I've seen can never give me the reason or cause of my nausea and vomiting. I've lost about 80 lbs the last 2 years because of this issue. I've had every test under the sun. Endoscopy, colonoscopy, ct scans, sonogram, stomach emptying study... I am a single mother of a 13 year old son that I can barely do anything with, because I'm always sick. I'm not talking about a little nausea. I'm talking full blown mouth watering, throat aching, dry heaving type of nausea. Now I've had a few surgeries too. I had a nissen fundoplication done in 1996. Tonsils and adenoids removed, gallbladder removed. With the fundoplication, it's done so tight that when I vomit nothing comes up. It's just dry heaving the entire time and it makes it feel like my insides and ripping out. I've been dealing with this for years and recently I've been so depressed about being sick and never getting to be social. I sit in bed sick and crying nearly every day. I'm really at a stop right now and have no idea what to do. The Dr's act like it's no big deal but this quality of life isn't even worth living. The only reason I have to live is my son. But I need at least some relief or I'm going to snap!!! If anyone has any advice or ideas, I'd be so grateful!! 😢

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Jame5263
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10 Replies
Bananas5 profile image
Bananas5

Well that is some list of meds.

I can only deal with a few for now. Fentanyl, Oxycontin and Gabapentin. The Fentanyl is very high and would work on its own. The Oxyis another which is strong and wonder why you take both? Same goes for Gabapentin.

Is your Doctor just giving you more and more pain relief rather than actually reviewing what you are taking? That could be a good starting place. More is not always best and certainly not with the strength you are taking

I have had pancreatitis so understand that pain. Mine was caused by an accident though where I lost 3/4 of it.Many many months in hospital but 15 years later all is well.

You have both physical pain and MH to deal with. Chronic pain can and does cause depression. The relentlessness of it just wears you down. Do you have any friends apart from your son? Someone outside the Doctor's surgery where you can talk with others?

Do you have a Pain Clinic where alternatives can be discussed?

Pat x

Madlegs1 profile image
Madlegs1 in reply to Bananas5

Agree fully- you need to SLOWLY come down off some of those meds- I'm sure they are causing you a lot of your problems.

Your Pharmacist should carry out a check on ALL your meds to see if they are counter active (???)

Hold in there- even if only for your son. -But more importantly - for yourself.

ssdw1958 profile image
ssdw1958

I can’t even say I know how you feel. Like Banana5 said do you have friends you can confide in.

I hope you find a doctor that will listen to you and find out what is going on with you and your body and if you have to talk with a a psychologist or a social worker that’s ok to I had a social worker called me yesterday and she is going to send me information.

Good luck to you and your son.

Sandra

Hels1989 profile image
Hels1989

I'm not much help here but my only thought is, with all of that medication at once it's no wonder you feel so nauseous! It made me feel nauseous just reading it!! Surely the docs must realise this! I am so angry for you. Maybe suggest that to them? That maybe it's the excessive medication that could be the reasoning behind the severe nausea. Lots of love xx

Jame5263 profile image
Jame5263

The pain started about 11 years ago and as time goes by and it continues to get worse, the Dr's add more pain meds to at least try to make it manageable. Every time I seek different opinions, all they look at is the heavy pain meds I'm on and try to take a lot of it away without offering alternatives. I feel as if they are looking at me like it's too much and don't seem to care about the amount of pain I'm in. If I'm running around a 4-6 pain level everyday, I would assume it would be much worse if they just lowered my meds without offering a solution. I was told by a surgeon that a fusion might help. But only with a 50% chance it would help. My mobility would be compromised and they said usually once they fuse a section, the sections above get worn down over time and then they would need to be fused. I really don't have any support. Most people don't understand how bad it is and thinks I should just "sick it up" and move on with my life. I would love to if I could! I don't want to be stuck in the house all day every day! Some days I do push through the pain but the nausea and vomiting is something you just can't take your mind off. I do see a mental health professional every month and have been in therapy many times. I just don't know anymore!!!!

crpsSucks profile image
crpsSucks

That is quite a shopping list!

I take gabapentin & fentanyl together and don't see the problem, if anything they compliment each other; gabapentin for the acute (weight baring); fentanyl for overall pain especially at night.

While your body does build up a tolerance (recently moved up to 50ug of Fentanyl and feel totally coherent). You are talking about doses of medication that is lethal to most people, so you may have passed the point where the side effects outweigh the pros.

The problem is that all medication has side effects (anti inflammatories have caused me serious gastro issues). Gabapentin even contradicts it's own list. So it's impossible to find which ones are not worth the hassle without a long process of trial and error.

It seems like your doctor (s) keep giving you more meds to keep you quiet. So you may need a new one to work with you. It took my a while to recognise doctors that aren't going to work with me.

Enzo777 profile image
Enzo777

Oh we have some things in common. I had a nissen fundplication 22 years ago. They sewed the flap very tightly I cant throw up either. After that surgery I have been nauseated every day since. I take naseau medicine every day. Zofran 8 mg works for me. The Phenergen 25mg is so sedating. I had to have fundiplication revision surgery. Thats when the pain began and kept getting worse. The naseau also got worse & I again can not throw up. I finally found a Neurologist who chaged my life. Due to the thoracic surgery & chest tubes, several nerves were severly damaged & I had horrible pain in different areas of my body. It took 4 test ( 2 nerve tests) and finally a diagnosis, treatment and pain reduction. I went to 3 Neurologists who had no idea....number 4 was the charm. I wish so much that you will be better. Never give up hope. I will keep you in my prayers.

cyberbarn profile image
cyberbarn

"The pain started about 11 years ago and as time goes by and it continues to get worse, the Dr's add more pain meds to at least try to make it manageable. "

Pain medicine has moved on recently, and they now know that if a medication at low levels initially doesn't work, taking more of it doesn't make it work.

Have you been referred to a pain management clinic? It is clear that the medication isn't working, and there is a lot of it, so there is no point in being on it. But it really needs someone who is an expert in pain management, not just a GP.

I hope you can find some relief soon.

Amkoffee profile image
Amkoffee

Before making my reply I looked through the comments and I think that a lot of them maybe all of them make good points. I have my own little shopping list of diseases and the one thing I think you might start with is to sit down with a pharmacist and have that pharmacist and you go through all of your medication looking for problems and solutions. I've done that once before with my doctor's office who has a pharmacist on staff. It's very helpful.

I'm not going to tell you to get off your pain meds because I'm on pain meds but typically you have one long lasting pain med and another one that's for breakthrough pain. I don't know if you live in the United States or not but here in the United States the crises has really hurt those of us with chronic pain because doctors and being told not to prescribe opiates very often or at very high doses. It sounds like you also have cholesterol issues and obviously stomach issues. The first thing you might try is to change your stomach medication. I changed over to Nexium at my stomach doctor's recommendation. And although it's more expensive it does help better. Never had the surgery you're talking about but now that I hear about you and one of the commenters I think I'll not do it. My problem is I burp and stuff comes up.

Back to your pain meds if your GP is the one that's prescribing them to you you need to go immediately to a pain management doctor. You don't say anything about having injections done to your back which has helped me. They don't help everyone but it's worth a try. There's also a back stimulator they can implant that helps a lot of people with their pain. And then there's also the TENS unit that helps a lot of people. Of course the problem with the TENS unit is it only works when it's on.

And finally I'm going to private email you a website and a couple of Facebook groups that are for chronic pain patients. I think you'll find a lot of support in them. And if you do decide to join one of them let me know or look me up when you get in there. Good luck to you honey I hope things eventually start turning around. I know the desperation that all these diseases and pain can cause.

Jonimo profile image
Jonimo

I have chronic back pain and have been told verbatim the same things about surgical options by 5 different surgeons. I took opiate pain meds (methadone, percocet, and others) in increasing strengths and got inadequate relief. I weaned myself down, then completely off them all this summer. Surprisingly my pain is about the same as when on the opiates! Dependency on the opiates just made the pain worse in the long run, is what I think.

But the depression from being debilitated so long continues. Glad I'm getting help with it, tho already tried 5 different antidepressants and each only worked for awhile. I feel like giving up sometimes too. But I know that would transfer pain to those who care about me (even tho they don't show they care much) I encourage you to keep advocating for yourself. Be a squeaky wheel - it's how to get docs to listen- make a list of questions and try to be as logical as possible. Lots of other great suggestions already given. Be kind to yourself, as you would be to a loved one in the same situation. You are worthy

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