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2040403 tn?1329850640

New member seeking advice

Hello, My name is Rich and I am new here.  I joined because I don't have anyone in my life who understands my pain, therefore cannot offer advice.  Plus, everyone that lives with debilitating chronic pain needs support and someone to relate/talk to!  My family offers little support because they are uneducated in this department.  It's not their fault, but I do wish that they would've researched chronic pain a little bit so they could at least try to understand how it has affected my life.  It would have benefited them as well, as my pain has also affected their lives tremendously.

I am 31 years old.  I have 2 herniated disks w/ sciatica, 2 fractured vertebrae, arthritis (ankles/feet, knees, hips, elbows, wrists/hands), DDD/DJD , Raynaud's, Insomnia, Anxiety as well as CFS and "All over body/skin pain" that has not been diagnosed yet.  I gave blood this past Wednesday as my PM Doc wants to check for RA.

Treatments I've had in the past were:  Epidurals, Physical Therapy, Biofeedback, Traction, Chiro, Massage and accupuncture.  All with little or no relief.  I was switching between Lortab 10mg and Percocet 10mg for 11 years with no increases in strength/dosing as it always kept me at a 5-6 pain level so I managed well.  The last 3 months I have pretty much been bedridden as the pain has been unbearable.

I had my first appt. with Pain Management last Wednesday and it went very well!  The doctor seemed to have empathy and listened to me.  My PCP always looked at me as a "charity case" and never took my concerns seriously.  My PM doc prescribed Morphine Sulfate ER 15mg x 3, Indomethacin 50mg x3, Neurontin 300mg x3, Pepcid 40mg x2 and Restoril 30mg x1.  

I have been able to get out of bed and do daily chores since starting these meds.  My pain level before the new meds was a 7-8, after the new meds it is a 6-7 during the day and at night when I lay down shoots up to a 8-9(at night my legs ache so badly, it feels like they're being run over by a steamroller).  

My new doc seems very approachable and compassionate, so I have no worries in talking to him about medicine.  The Morphine is NOT working...at all.  The Lortab/Percocet didn't work either after 11 years of the same dose.  Does this mean I'm doomed?  I hear that Morphine is extremely powerful, so I don't understand why it isn't helping.  Let alone the horrible side effects  i.e. Constipation, Itching, Headaches, Skin rash.  At my next appointment, should I ask for a higher dose of the Morphine or try a new medicine?  I am not currently working and have no medical coverage, so my medication options are extremely limited.  My doc asked me about Methadone, but the horror stories I've heard/read about scares the daylight out of me(even though I know it's a very effective pain reliever).  Any suggestions/tips would be greatly appreciated!  All I want out of life is some pain relief!  I never expect to be pain free but there's got to be a way to make it manageable as I am merely existing, and I want to live!

I apologize for the novel, but this is the first time in 11 years I have "opened up."  I've built 20ft. walls around myself because it's less of a headache/hassle if I don't talk about my suffering as 99% of people don't understand what it's like to be in constant severe pain.

A BIG THANK YOU in advance for any replies and may you ALL have a tolerable day and night!

-Rich
10 Responses
Avatar universal
First of all, I'm SO sorry your family doesn't understand the way you want them too. It's very frustrating when your support system doesn't do it's job. I'm in high school and my friends barely understand what's going on----they sort of shrug and nod, then change the subject, it's very irritating. Of course, as you said, it's not their fault that they don't understand where you're coming from. That's extremely hard to do, even for someone who is very empathetic. What I would suggest to this end is to try to get all the little print-outs and pamphlets you can on chronic pain. If they won't do the research, then the burden (sadly) falls on you. If you really want them to understand, shove the information in their face. I've had to do this multiple times.

Sometimes, people don't want to face that something's gone wrong with someone they care about. They suppress the emotions and they avoid the topic. Unintentionally, they're being extremely selfish and causing you psychological pain, which isn't right. So just do the work for them. Then they won't have any excuse.

Second... Drugs. I am very, very pro-therapy, of course, but when it comes to medication I am very cautious. There's a lot of addiction history in my family. Thankfully, despite all my surgeries and such, I've managed to avoid a morphine addiction. DO NOT increase the dosage of your morphine more than 100 or 200mg over what you're taking now. Talk to your doctor before you do this. You might want to bring up that morphine isn't working so he/she can help you with a new medication. I don't have disk problems, so I can't range your pain... But a rule I keep is to avoid medicine as much as possible, and try to keep the dosage small. In other words, if I have pain that's tollerable, I'll take it, only because the alternative could be addiction to some drug.

My dad took methadone, and I've been on it myself in the past. Methadone is very, very powerful, as well as addictive. You can bring this up to your doctor, but they will probably tell you the same thing. Because of the power of the drug, it's usually not needed in large doses. Methadone helps many people conquer addiction when given in small doses, so I could think this should help you with your pain.

I do not know much about your other medications, I apologize. There is a category on this site where you can talk to doctors about medicines, maybe you want to try asking them?

Finally, I have some suggestions for you:

I am currently on gabapentin and antetriptyline. Gabapentin is for nerve pain, but I've heard it works wonders for people who have disk problems. Gabapentin is also not addictive, and you can go up to relatively high doses without suffering massive side-effects. Gaba more takes away the edge of the pain until you get in to high doses, and it can cause dizziness, so avoid strenuous activities or driving until you know how you'll react. Antetriptyline (I think I spelled this wrong, FYI) is an anti-depressant, but in low doses it has been proven to be a powerful pain killer. I have severe GI and back pain, and it does wonders for me at on .5mg per day. (Take this at night, because it knocks you out)

Also, have you ever talked to a psychologist? I'm not calling you crazy, I'm saying this because it worked for me. The psychologist did not give me any drugs, they just sit and they listen. If you're thinking about the pain, you're fearing it, getting anxious and stressed out. This actually makes the pain worse because they body in constricting in ways that would avoid pain, but actually are intensifying it. (If that makes sense...) All I know is some of the relaxation and deep-breathing exercised have worked wonders for me!

Heat therapy is my best friend. The physical therapist comes with a machine that looks like an ultrasound, but it's all warm electrical impulses. It's not painful at all, it just feels amazing. It's my favorite treatment right now, and has done more for me than most of the medicines I've used.

I'm happy to hear you're able to get up and move a little. Stay strong, I know what you're going through and its a long, rought road. Feel free to add me as a friend and message me if you need to. Here on the pain board, we know what you're going through.

Feel better! I hope this helps!

~ Emily
2040403 tn?1329850640
Thank you for your reply, Emily!  

- I haven't and won't increase any meds without my doctors approval, and 100-200mg of Morphine would probably kill me since this is the first time I've ever taken it (outside of IV in the ER, of course).

- My doctor was the one who brought up Methadone.  I declined because If I can't afford to go to the doctor one month, I don't want to suffer the withdrawals of this drug as it is one of the hardest to detox from.

- I do take Gabapentin (Neurontin) for my sciatica pain.  Helps me tremendously!

- I have tried many, MANY Antidepressants and they are not well tolerated.  They have an opposite effect on me as I tend to get more depressed.  Muscle relaxants also have this effect on me which is why I avoid them even though my back is hard as a rock.  LOL

- I have seen quite a few Psychologist/Psychiatrists.  When I started having pain in/on my skin, that was it for me.  I thought I was just going crazy.  My family also influenced this feeling.  All of the doctors I have seen say the same thing.  I am not depressed.  I have moments when I am very "blue" or down...mainly when I'm rolling around on the carpet in excruciating pain.  Other than that, despite my pain level, I am a very positive, upbeat and proactive individual.  =)

Again, THANK YOU for your response!  I'm glad I found this site and hope to find some answers as well as help others who are suffering.
Avatar universal
I have hope for your new pain management. There are additional types of nerve blocks (other than ESI) apparently not yet tried on you, there are inplantable morphine pumps which admin tiney doses, and there are combos of drugs to take (anti inflams, anti depress, muscle relaxers etc) to decrease your pain and your need of narcotics.  The older drugs like flexeril are cheap, be sure you MD knows you are paying for drugs there are some things wich are free samples. Ice is amazing and works wonders if you take the time to try it. Your typing above says you need more/different anti anxiety meds.

The all over skinpain I am very familiar with, I have not been diagnosed, too many other problems to follow up with,  but would bet money it is a peripheral neuropathy. Makes you almost feel like you have a bad sunburn, so hyper sensative. I can't offer help for that.
547368 tn?1440545385
Hello and Welcome to the Pain Management Forum. I am delighted that your found us. However I am so sorry to hear about your wide-spread Chronic Pain. My heart goes out to you!! I sincerely hope you'll be an active member.

As said above, I have hope for your new PMP. Talk to him. He sounds like he will be willing to work with you to find a better solution to your pain. Pain Management is a trial and error process. It's not a one size fits all. Finding the right combination of medication as well as treatment is often a trial and error process.... and takes time.

There are other choices besides Morphine.... which has not been effective in reducing my pain either. Discuss this with your PMP. Our systems are all different and what works for one person may not work for another. So don't despair. Your  PMP is aware of this fact.

Antidepressants have also been ineffective for me. I've tried numerous ones. The side effects have been intolerable.

However a Therapist that specializes Management can be extremely helpful. I'm not talking about depression. I am not depressed either. These Therapists can help us deal with pain and the changes it forces into our lives. Most of us don't even understand how Chronic Pain can and does change our psyche.  I truly think they can make a huge differance in our lives. It's worth a try.

You can also educate those that you love. There is some good literature and articles on line regarding Chronic Pain and it's effect not only on us  but those that love us. I'll provide you with a link or two to some information I've copied in my journals. It's been a long time since I have posted some of that information.... so I'll get it posted in the next day or two.

Here's a link: http://www.medhelp.org/user_journals/show/155544/Letter-To-People-Without-Chronic-Pain

I've made it a point to educate my immediate family. Some get it, at least the best they can... others don't and never will. Our MedHelp Pain Management Community is support and informed... and most of all, we do "get it." So please post often and keep in touch.

Peace,
~Tuck
Avatar universal
You're very welcome :) By the way, I meant 20 - 30, not 200 - 300. Oops haha

I'm sorry to hear anti-depressants haven't worked for you. As far as the gabapentin goes, since you're already on it, you might be able to suggest upping the dosage a little bit.

I agree with Tuck and Rlawson---consider a pain management therapist, and looking in to other kinds of nerve pain apart from ESI. I'm a pain clinic right now, and I meet with OT, PT, and a pain management therapist. It's the best stress relief ever!

In the way of muscle relaxants, I find they help me take the edge off. The one I'm on right now is hyoscyamine, and it's very helpful for me. Its amazing how much stress and tension the muscles carry around an area that's in pain, and the relaxants can help with that in the least.

I hope you feel bettter. Please keep up posted!

~ Em
2040403 tn?1329850640
Wow!  I'm in awe right now.  This is the most support I've had...ever.  Thank you so much for your response!

Herein lies my problem.  I'm broke.  I mean broke broke.  I'm unable to work, I leach off of my Father and live with him.  

I hadn't been to my PCP since November, which is when he referred me to Pain Management and wrote my last script of Lortab 10mg.  I had to BEG my Mother for the money to go to PM, which she did not have.(she just moved to Arkansas)  Finally, after 3 months of suffering, she recovered financially  from the move and was able to pay the $210 for me.(thank god)

I just simply cannot pay for any treatment.  Today, I have finally put my pride and embarrassment aside and applied online for SSDI.  I should've done this years ago, but as I mentioned...my pride got in the way.  I thought that if I was deemed, "disabled," that it would constitute me giving up on my life.  I now know and understand that it's OK to need help.  After all I did pay into Social Security all of my adult life.

I will stop now.  It seems that I am extremely long winded.  All of this just to explain that I cannot afford treatment.  LOL  Sorry!

Again, thank you for caring!

- Rich
2040403 tn?1329850640
Tuck-

    Thank you for your response!  I have tried for 6 years to educate my family to no avail.  My Mother finally understands now.  Unfortunately, she herniated a Lumbar Disc and is suffering from Sciatica.  I hate that she is going through this, but at the same time made her understand a little about what I go through on a 24/7 basis.  My Father on the other hand, that's a lost cause.  He's from the, "Get over it - Rub some dirt on it - Men don't complain about pain etc. etc. etc." era.  I've personally seen the man take 2 Aleve tablets in my entire life.  I wish it were different with him, but he's an old dog that doesn't want to learn new tricks.

Again, thank you for caring.  All of these replies are really touching my heart.  I've suffered in silence for so long.  I'm realizing that I am not alone, and that there are people like you who know and understand and are willing to offer support.  Thank you from the bottom of my heart!

-Rich

P.S.  May I add you as a friend?
2040403 tn?1329850640
Thank you for replying!  =)

I know I need a muscle relaxer, but I really don't like the way they make me feel.  I feel "blue" the next day and they make me ever more tired.  Couple that with my fatigue and I'm completely useless!

I've done Biofeedback in the past.  It taught me some great techniques for meditation, which I still use today.  Even with meditation, the  anxiety wins every time.  It makes me feel weak...I should be able to control it much better than I do.  

Somewhere during the past 4 or 5 years, I have lost my ability to cope.  It seems I have no coping skills whatsoever anymore.  I've started to keep a pain journal/diary again and that seems to be helpful.

Again, Thank you!

- Rich
Avatar universal
Okay, this might be crossing a line, but I'm gonna say it anyway. I've been in a similar situation and I find this to help:

Do you have any kind of religion or belief in a higher power? Even naturalism (those people who worship trees and stuff...) or meditation?

I'm asking this because I find it very helpful myself to pray. I am a Christian, a Lutheran, and I find that prayer has been my best coping system. I've hit rock bottom before, back when everything first started. I had friends who stuck by me--they still do--along with family, but they just don't get it.

Now, I'm devout to my religion, and I attend church each Sunday. I wouldn't be able to deal with all the doctors appointments and the pain and everything else if I wasn't able to lock myself away somewhere and pray. Jesus understands, He gets everything, and He won't judge me. I can do absolutely nuts and not worry about being shunned.

I'm not saying you need to pick up religion, but I am saying that if you believe in something---anything---try meditating or pray to that "something". It really does help to talk to someone (or something) that really understands whats happening. It helps me sort out my thoughts and what I'm going to do. If you don't believe in anything like that---and this is going to sound silly, but I'm serious---try keeping a journal. Admitedly, I have one that I named after my favorite singer, and I "talk" (write) to "him" every night. I know it sounds odd, but its helpful.

I just thought I would put it out there as a suggestion.

Get well,

~ Em
441382 tn?1452814169
However well Lortabs and Percocets may work to control your pain, keep in mind that they are not good choices for long-term pain control, which is what you are going to need.  Because of the high levels of tylenol in them (even in the low-dose tylenol versions of them) in order to get enough of the opiate to control your pain you are going to be either getting very close to or surpassing the toxic daily dose of acetaminophen.

If Percocet was working to control your pain, why not ask your pain doc about switching either to immediate release oxycodone in the pure form (comes in 15 and 30mg tablets) or oxycontin (the time release version of oxycodone)?  It is unreasonable to think that after 11 years you could be maintained at the same dose and get the same degree of pain control.  As time goes by, our bodies not only age, but our conditions worsen and it's only natural to figure that more or stronger medications are going to be needed to get the same degree of pain control.   I expressed the same concerns to my PM doctor several years ago and when he explained things to me in this way it made perfect sense to me!   The types of conditions that cause chronic pain don't GET better with time, they get WORSE!  So it only makes sense that as time goes on, the same dosage of meds isn't going to help like it used to.  True enough, our bodies get used to the medication however, if the condition remains unchanged, then the dosage could remain unchanged.  It's only the worsening of the condition that demands an increase in the medication.  If you increase the dose and still don't get any relief, then the meds have stopped working for you and you need to try something else, but as my doctor told me, 7 out of 10 times it's going to just be a case of the dose no longer being strong enough.

Have you applied for Social Security Disability yet?  If not, you need to do that.  I would suggest doing what I did and going directly to one of those attorneys that fights the battle for you because you are GOING to get turned down and have to continue the fight.  I had attorneys fighting for me and I was still turned down three times and had to go to a hearing before I was awarded my benefits.  It was totally worth it, though, because I also got Medicare, which pays for my doctor visits, and now I also have one of those prescription plans through a company via AARP that enables me to get the meds that formerly cost me $500+ per month for only $8.  And my monthly insurance premium is only $45.  As far as the attorney goes, because it is a disability thing, you only pay the attorney IF and when you are awarded disability.  If they take your case, you can almost be 100% assured that however long it may take, you WILL get your benefits because they never take on a case that they know they can't win because they don't want to put the time and money into it if they know they won't get their fee when you are awarded your benefits.  So if you go talk to the attorneys and they agree to take your case, rest easy because it will just be a matter of time until you are victorious.

You were fortunate to have found this forum.  The people here are wonderful and they are a GREAT support system!  Hang in there!  Better days are coming!

Ghilly
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