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Alsolute delima.....feeling lost!

Sep 30, 2015 12:27 PM

Hi guys, today is the third day I'm at my pain specialists.

Day 1. I had initial a review again. I was told by my GP to go to my specialist with my normal meds. She said by feeling painful in all areas of the back causes more complexity for my specialist, so I took her advice. Went there and my specialist was bending me backwards and forwards, side to side. All seemed good. He was surprised why I'm even there. I told him the areas of feeling pain but he couldn't figure it out. Nonetheless, ordered to get an MRI done the next day. Was told to come back for review without the meds.

Day 2. Got my MRI done. Gave me a cd and sent me home. My appointment with my specialist appointment was the next morning.

Day 3. Today, I didn't take any meds since yesterday afternoon, ensuring I have no meds in my system, I obviously felt like crap. Nonetheless, showed my specialist the cd, he scrolled through it, there's like almost 20-40 pics in each category in folders. He was going through them not in detail, but maybe he was looking for obvious signs, he said my back was totally good. No bulge touching the nerves and all and there was absolutely nothing to fix. He thinks I just need yoga. Despite the constant pain I'm trying to explain, I requested for a nerve block, higher than the previous surgery I had back in May 2015.

We did the tester, as in not the real surgery but having local anestethic to see if it worked. If it does, then I'll have the real surgery done. After that test, obviously in a lot of pain still, I didn't feel much relief. Because I didn't have meds earlier, I was a 7, after the test, I guess I had slight relief and gave it a pain lol of 5. There was two spots where he felt he could do more, added some glucose solution. He said I should feel worse but it'll take weeks for that to take see any result. All in all, I was in so much pain when I got home, had my potent cocktail and slept the entire afternoon.

I'm in a dilemma only because I was actually quite suprised to hear that there was nothing to fix. Is it all really in my head?? I could feel my pain again now, my meds wearing off and all. I mean it's good news to know I don't have any sort of disease right? But the pain I'm feeling is just totally unbearable.

He's going to basically mail my local GP to tell her to take me off my current opioids as he disagrees, so do I for that matter, but he will be replacing it with some other anti inflammatory meds. Now as a business manager, I can't be dazed or feeling sore all day everyday. I constantly needs to be on the ball and make quick important decisions. I'm just worried what if it doesn't work ? What do I fall back on now?

I felt quite disappointed that my results came back positive, now I just couldn't explain why I'm feeling so much pain. I'm so lost with what to do. Am I just going nuts??

Sep 30, 2015 12:56 PM

No you are not going nuts, I once had a doctor tell me my pain fibro was caused from not eating enough oatmeal, he was writing an article in the medical journals on the benifits of oatmeal. Dr's don't know everything that's why it's call practicing medicine. I found western medicine to be limited and started reserving eastern medicine many years ago. Hope is always with you trust your instincts and your intuition you know your body better than anyone else. Love and light. MoShell

Sep 30, 2015 1:21 PM

No, you are not going nuts. I've been through pretty much the same thing. Octo, if your specialist didn't do this, please make sure they take a close look at the facet joints on that side. Those little buggars can be a tremendous source of pain even if MRI doesn't catch any abnormality. Just my two cents.

Sep 30, 2015 2:12 PM

I'm not sure when I will get a chance to see him, im suppose to send him the pain chart in the morning.

I had a thought about this. Since my specialist saw nothing, I'm going to get a report from the hospital which I did the MRI at. Hopefully it's something I can request. My specialist didn't see the report as I had the MRI done the day before and over the counter at the hospital said it takes a day or two to get the doctors review.

I'm back at square one now if they change everything. I'm really not looking forward to moving forward. I can honestly say the beta test this morning didn't do anything for me. So if it's not my facet joints nor my disc bulge, what else could it be?

I've travelled 6000 miles and slightly over $10,000 out of pocket for this trip. Not exactly what I want to hear at all. I'm just sadden by this result although many people would be happy. My wife was happy, my mom whom travelled with me was happy, it's just me.

Constant spasming of my muscles now, cramping and burning sensation. Pain is at a 4 right now but I know it's because of my meds. We have all gone through this vicious cycle of painful days and been bed ridden because of it. My days are back to norm now where I'm getting 8hrs or more of work done, 7 days a week. Dreading any change to my routine unless it was a cure. Sigh.....hopefully I can get more from my physical therapist while I'm here.

Sep 30, 2015 3:33 PM

Octo, this is the worst thing I think doctors do to us. Instead of looking at us and saying, "I'm not able to find the problem I can fix." They make it sound like "there's nothing wrong with you, stop faking it." Honestly, whoever those actual "fakers" Are who make every Dr, hospital, and social security administration doubt us... I think I'd like to strangle them. I've basically never had good health my entire 27 years of living, but I have ALWAYS fought and tried to go to school, to work. I literally would not wish this life of "lounging around at home" on anyone. Why would anyone WANT to PRETEND to be this sick?! Sorry, this aggravates me to no end. All this to say, it's not in your head and we're all fighting this same battle. You are a warrior every single day, don't you ever forget it (like I keep doing). Prayers to you on your journey.

Sep 30, 2015 6:32 PM

Kittypain....you literally described how I had been feeling the whole day! Thinking back, I do somehow feel that I'm labelled a faker by my specialist. I've never viewed it this way but it kind of all make sense.

I work 8-12 hrs everyday, good day or bad, I still have to work as I've lost 3 employees recently. They are key roles in my family business as well. Even 5000 miles away from home/work, I'm still working talking to suppliers and managing operations, 4 hrs ahead of time too!

The specialist thinks I'm too young to be on any opioids so he wants to change that. As long as it does the trick, it doesn't matter to me, just don't label me as an addict or a faker. I've lost my social life, my sex life and at the brink of losing my family if I'm constantly bed ridden. All this is just putting me into a depression. Sigh.

Sep 30, 2015 7:32 PM

Octobot, your mom and your wife are happy because they are hearing "there's nothing wrong" without experiencing what is actually wrong. Your pain is very real. If it wasn't, you wouldn't be feeling it. Even if it was psychosomatic (which I'm certainly not saying that it is), that doesn't mean you're not experiencing it.

You may find it helps to look up a more objective pain scale to talk over with doctors and family. I know I recently realized that I was under estimating my pain by several points because my "worst pain experienced" is so much worse than most people ever experience. I like this one https://lane.stanford.edu/portals/cvicu/HCP_Neuro_Tab_4/0-10_Pain_Scale.pdf

hope you get a diagnosis soon!

Sep 30, 2015 7:47 PM

You had previous surgery on your back and they are not taking you seriously?

Sep 30, 2015 8:06 PM

Octo, you do have a right to access a copy of the MRI report. Those are your records and your life.

Sep 30, 2015 9:54 PM

Octobot, when you ask for a copy of the report tell them you need it to take to your PCP, or another doc. Many MRIs mention things like facet issues. And they do cause a lot of pain! Like you, I was relieved to hear I didn't have MS or Parkinson's and such. But being told my symptoms are from my mind, due to a break in the communication circuit between the brain and body part, it floored me and my hubby. Mayo says they can help reprogram my brain's central cortex and as a result many of my symptoms and pain will improve our go away. I'm skeptic, thinking it sounds like brainwashing. But in researching it, I'm thinking, OK maybe they're right. I know I'm not faking, nor am I crazy, but maybe I do have a problem with my brain: Central Sensitization. http://www.instituteforchronicpain.org/understanding-chronic-pain/what-is-chronic-pain/central-sensitization.

you can look at this link and see if it sounds familiar to you. I think from reading posts, there may be many of us with undiagnosed issues that this could possibly fit. I'm not saying it fits everyone or even you, or me. But I'm keeping an open mind. (((Hugs))) for support. I our and pray you'll find the right answers. May you be blessed with a peaceful sleep tonight, you and everyone! πŸ™πŸŒΌ

Sep 30, 2015 10:19 PM

We all feel for you mate. To have no real family support and I'm sorry to say a total dickhead for a specialist is a hard pill to swallow. ( pardon the pun). I have had similar situation where my mri doesn't reflect the amount of pain i am in therefore i must of been faking it. And like kittypain said who would fake this? This is no life for anyone who is experiencing pain on a daily and you are being extra strong by continuing to work. You might want to look at pacing as it is important to know when to slow down. Especially when to stop before you're pain gets too high. I think what is more important is to sit your family down and have an open and frank talk with them about their lack of support. If they aren't on your team how are you suppose to convince anyone else? I wish you the best of luck mate. Just know you have all us cheerleaders behind you. Xx

Nov 09, 2015 4:46 PM

Guys I haven't been on for a long time due to personal reasons. I'm trying to stay off opioids for the past month and I literally feel like crap.

I can't function now....haven't done work for weeks. Only little in between. Going to work feeling sore and would literally sit there in agony just to be there......

Can someone tell me how long the doctor keeps you on opioids without any solution? I'm soo sick and tired seeing a doctor every week or so for my meds..... I'm getting really really depressed now. In a small community I'm seen as an addict already and I felt I've lost all my pride and joy....

I'm tired of life now, I'm tired for being in pain, I'm tired for asking for meds every week. I'm tired for not achieving anything in my life.

Nov 09, 2015 4:55 PM

October, get another opinion and fast. Find a neurologist or a neurosurgeon. Someone who deals exclusively with the spine. Please! Pain Drs are just that. They treat pain. They don't diagnose spinal issues. There can be the smallest thing pressing on a nerve or the spinal cord and without the training and experience, no one will see it. I know this because it happened to my late husband. Have it reviewed by a specialist.

Nov 10, 2015 8:33 AM

Octobot, first I'd like to say I'm glad that you came back to fill us in on how you are. I've been wondering where you have been. I'm sorry you're suffering. I understand all the feelings you are having. They are unfortunately common. The stress of every day life in that kind of pain is dreary and wears on you both physically and mentally. Hang in there, you're stronger than you think. Some doctors will keep you on for quite some time with hopes of giving you relief. However, I found out yesterday at pain management that there is a new test (which they did on me) that takes 2 swabs. One for each inside of your cheek. They send it to the lab and it tells them your genome type (which remains the unchanged from birth to death) and it can tell which medications will be helpful and which ones won't. This helps the doctor make more informed and beneficial decisions about what to give you and what to change or raise or lower to better help your pain. Ask your doctor about it. If he/she doesn't know about it, see if you can find a pain clinic and ask them. Hang in there and lean on us, your pain family, as we will help you through. There is a light at the end of the tunnel, focus on it, hold onto hope because it's always there. If you're getting to the end of your rope, tell me, I'll let you hang onto mine!! Sending you gentle {{{Hugs}}} and prayersπŸ’•πŸ™πŸ»πŸŒ»

Nov 10, 2015 6:47 PM

Octobot, I'm glad you updated us. You've been missed. I hate you're suffering. Cearea is right about getting another opinion. I don't understand having to go to a pain clinic on a weekly basis, but then I'm only taking Tramadol due to allergies. Mine mostly gives me nerve blocks because of my allergies. You're in my thoughts and prayers! I truly hope you can find a doctor who can give you better relief. (((Hugs!)))πŸ™πŸŒΌ

Nov 10, 2015 10:45 PM

Thanks guys. This trip was basically my third specialist.... I've spent all my savings on the previous trips. Literally have nothing to fall back on which is distressing not seeing much results.

I'm in a small community. I have to fly aboard for specialists appointments. I'm visiting my local GPs every week for meds because they won't give me repeats or anything. So a pack of diazepam (30s) lasts me about 2 weeks. Morphine 5mg only 20 per pack, lasts me 10 days. Oxy Contin 10mg lasts me exactly 2 weeks....

I haven't been taking my meds regularly as all I'm feeling every time I visit is that I'm an addict. There are no other GPs here so I do not have a choice. I feel so confined and restricted and feel that there's no trust and it's killing me deep inside.....my wife understands the pain but there is nothing she can do for me.....I'm left crying at night in pain and not being able to sleep for weeks now. My body won't even let me crash due to fatigue.... It's been taxing....I'm feeling rock bottom all over again. I can't confide in them as they might literally take me off my meds or worse, put on my file I have a mental illness. I can't live like this....

Nov 11, 2015 12:21 AM

Hi i feel for you . 1. Get to see a psychiatrist from your GP. 2 you're not crazy psych drugs help. especially anti epilepsy. 3 I had crushed disc's and had an MRI in the hospital and they didn't see it.Amazing .. get GP to send you to Hydro therapy so you can relax. ha ha, but it does help heaps. You get to see other people and the physio' know about chronic pain. This all helps my being driven crazy. Bye

Nov 11, 2015 5:14 AM

Alwayz, both myself and my husband had that test done at our pain mngt places. It was really interesting. It also lets you know how your body metabolizes opioids and other meds. For me, it told the doctors that my body metabolizes opioids fast, meaning I have to take 3 ER pills a day rather then the normal 2.

**Before the test, make sure your insurance covers the cost of it. Apparently, my Medicare didn't, and I just got a bill for $600.**

Some pain mngt places do try to diagnose and solve problems. Others give up if it isn't easy. If this place ain't cuttin it,find someplace better. I am having to do that as we speak so I know it isn't easy. A neurologist and psychiatrist/psychologist are very good ideas. Try to find a psych Doctor that specializes in chronic pain. Trust me, they're out there. I'm seeing one now.

Another thing, and this goes for everyone:



Only 10% of ppl who are on opioids become addicted, and only like 2% of those are ppl with chronic pain. We are less likely to become addicts. This is science.

We may become tolerant, and need increases, BUT THAT STILL DOESNT MEAN YOURE ADDICTED.

Opioids are not the boogeyman, they are safe for most of the population, especially ours, and ppl need to grow the F up and leave us alone.

Rant over πŸ˜‡.

Nov 11, 2015 5:27 AM

Octobot, you don't by any chance have acid reflux, do u? Do any of these symptoms sound familiar?: Acid Reflux, Shortness of breath (especially when lying down), odd chest pain, nausea?

My husband had terrible back pain and was out of work for years. No one could figure out what was wrong with him. Finally, someone did an mri that showed he had a very large severe hiatal hernia. It was so bad that it had pushed his diaphragm out and up, which pulled on his spine and caused intermittent sciatica, it sat on his lungs at night and made it hard to breathe, it pushed on his heart causing chest pain, etc.

Don't give up. Something is causing your pain. Don't let doctors give up. Ask them if something else physically could be causing this pain, like my husbands hiatal hernia. Have a full body scan. Look up your symptoms on Google. Anything. Good luck and ((hugs)).

Nov 11, 2015 9:13 AM

Arnie, thanks for the info on that test. If it's not covered, the doctor's office won't balance bill me since I've been going there for 20 years. I'm hoping it will tell what will work better than what I'm on. I already take Morphine ER so I don't know what they can do. I'll figure it out when the time comes. πŸŒ»πŸ™πŸ»

Nov 11, 2015 9:15 AM

Sorry amie... I spelled your name wrong by mistake. πŸ’•

Nov 11, 2015 9:49 AM

Octo just because they cant see anything doent mean nothings wrong! I was in pain for years .. countless tests, mri's, xrays, catscans .. you name it .. and always nothing stood out .. then finally they (well the right doc. . My rheumy) figured it out. I still struggle but I am better on the treatments for rheumatoid arthritis. So don't give up .. i think they like to tell ppl its in thier heads sometimes because they dont really look hard enough or send you to the right doctors.

Out of curiosity have you tried a chiropractor? I started seeing one for my shoulder cuz pt didn't work and hes already helped alot with my lower back pain even though that wasn't what i went for and ive only seen him 3 times.. and hes made a big difference in my shoulder. Its worth a try even if it just helps a bit.

Best wishes!

Nov 11, 2015 3:00 PM

I agree about opiates, are really helpful. They didn't work for me, that's why I added the idea to try different medication regimes and to get them via a psychiatrist. I love this catch my pain as so far, all I've read, is from really helpful people. and I'm about to use some idea's that have been suggested to me already thanks everyone you have helped me heaps

Nov 11, 2015 3:37 PM

I have been told that my passion would be fine if I just walked more. Told it would go away if I stopped smoking. Told it was all in my head and told other various nonsense by many doctors. Even my doctor that is treating the FM sometimes doesn't believe it's real.

Hang in there and keep looking for good help. There are good doctors who understand theses things out there.

Nov 11, 2015 3:57 PM

Hi amazing. I only just started in this community, and the help and warmth is unbelievable, I think we all know we have a long road up a mountain hopefully with some easy slopes. I ve been up all night, with no relief except tearing my hair out . 25 showers 😊 but this community gives me a smile and a face the day attitude. πŸ˜€this thank you to everyone. bye Greg

Nov 19, 2015 2:34 PM

I'm a wreck lately, sleeping wee hours of the day and waking up to constant pain. I've ,are appointments to see my GP for meds but I either can't wake up in time or I feel too sore to even get out of bed. No appointments = no meds, no meds = sleepless nights etc.

Nothing is working for me right now. Mentally and physically exhausted to the max and a tonne of work waiting for me to get back into. I'm just speechless with pain....I really need to ram a wall head first right now. ER can't do anything for me unless they can put me right out which I really need right now.

Nov 19, 2015 2:34 PM

I'm a wreck lately, sleeping wee hours of the day and waking up to constant pain. I've ,are appointments to see my GP for meds but I either can't wake up in time or I feel too sore to even get out of bed. No appointments = no meds, no meds = sleepless nights etc.

Nothing is working for me right now. Mentally and physically exhausted to the max and a tonne of work waiting for me to get back into. I'm just speechless with pain....I really need to ram a wall head first right now. ER can't do anything for me unless they can put me right out which I really need right now.

Nov 19, 2015 2:36 PM

Octobot, go to the ER. Maybe getting a shot or two, that puts you out, is exactly what you need. (((Hugs))) & I said a prayer for you. πŸ™πŸŒΌ

Nov 19, 2015 6:43 PM

I hope they can help at the ER. And don't let anyone tell you that you are an addict just because you are in pain. Chronic pain patients don't become "addicts". Try to get to the Dr asap. You need those meds. Don't let anyone make you feel bad because you are in pain. And tell your family to get off their asses and start helping you! Hugs

Nov 23, 2015 6:37 PM

Thanks guys, feeling better after a rant.. Being another sleepless night. Just waiting for our local hospital to open and hopefully they can squeeze me in today.

It's been more than 2 weeks since I've been on regular meds and this few weeks has been hell for me. The dr I have is good. She had been more than understanding. It's just the non repeats that bugs me and since each meds runs out at different times, I have to go in each week.

I've tried a couple of times hinting to her that my pain is not going anywhere and I'm sick of the weekly visits! She indirectly ignores my request and sent me on my way... Zzzzzzz

How did you guys get pass the initial stage where the dr is like look, I understand now and I'll let you use those meds long term ?

Nov 23, 2015 6:46 PM

Speak up! Drs don't hear hints. You live in a small town am I correct? Surely there is just 1or 2 pharmacies? Tell her it is difficult for you to come in every week. Offer to sign a pain management contract if you haven't already. Speak frankly with her. Tell her what is bothering you and what you would like to do, and then ask her what she thinks. I say you have been through enough already.Do you have to pay every week? That could be a good way to get her to extend your meds.

Dec 01, 2015 2:38 AM


Thanks for your many inputs and others here as well. Just managed to fit in an appointment and every time I see my doc, I'm lost for words. I just let her dictate what meds I take and how much to take. I don't dare to speak up risking losing everything.

Well my nightmare came true after my last visit, last Friday. She took me off my break thru pain drugs and only have me on anti depressants and diazepam for my muscle spasms.

I still hurt and can't function. But made an appointment this Thursday and bringing everything I've got. I wasn't well prepared last visit. Spent 30k this year just on specialists and travel expenses!

I think a lot of us, obviously not the individuals whom have been in pain for decades, referring to patients like me whom has been in pain awhile maybe 1-5 yrs, we don't speak up enough because we are still quite new to all this pain and are still actively seeking viable treatments.

Because of that, we let the doctors dictate what we use our meds for. We don't dare to come out of the clinics feeling like an addict, so we let them do what we think they know best, which in most cases isn't the right outcome for us. Only we have to suffer, not them, they see pain, but they don't feel shit!

I'm just going to head in there and say look, all this morphines and opioids did me wonders and let me resume my life on a more normal basis than what I am on now. So if you don't have any solution for me at this stage, don't change my meds!

Cearea, location isn't an excuse for not making it. In a small community, my only hospital is 5 mins away, pharmacy is only 10 mins away lol! I've just had it with my pain clinic which was 5000 miles away. They can't fix me now they told me. I'm willing to go to another one. Just need time and I've lost all my savings visiting the last one. There are no special clinics here due to population and the isolation from the main cities.

Dec 01, 2015 2:45 AM

There's one thing I would like to add as food for thoughts especially to new pain patients.

I was a successful entrepreneur, raking in over 30k a month. After hurting my back, I've lost my ability to function and having such an income I was miserable till I've lost it all. Mentally and physically I'm not fit as a human being.

No matter what anybody says, we have to really learn to speak up more. Can't give up looking for new options, I haven't yet. Though life isn't great anymore, as of this moment, I will only dictate what I need from my doctors provided its within reason and not out of line.

I hope you all do the same as what I'm about to do. Wish me luck !

Dec 01, 2015 10:03 AM

Good luck & God bless you Octobot! (((Hugs))) πŸ™πŸŒΌ

Dec 01, 2015 3:02 PM

I have twenty years into this tedious life. Outside of my morphine pump, the best thing I ever did was to find a rehab place that has a warm therapy pool. Working out in the pool saved my life.
All doctors blow. My pain doc is treating an ER physician that lost his job due to pain. That doc is going through severe guilt over the way he treated chronic pain folks over the years. Welcome to our world.

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