Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Need more pain meds

Jun 09, 2015 1:46 PM

First time here. I'm struggling to get more pain meds with no help from doctors. They have decided I am on the max, yet I'm often in bed for days just trying to sleep so I'm not in pain. They made me go through pain management classes a second time, but realized I am asking and have been doing most everything to cope, yet I run out of my pain meds every month. I have fms plus joint pain everywhere. Recently I have had a new kind of pain in my right side under my ribs. Pain goes from front to back. Went to my pcp and she just attributed it to referred back pain. So frustrated not to be taken serious.

Jun 09, 2015 4:27 PM

Oh yes, our fine government at work. The doctors are afraid to actually practice medicine for fear that they will be labeled a pill mill. Is there anyway that you can be referred to a different pain management physician? Most pcp's will not treat pain anymore. I had 3 doctors before I found one that actually listened to me and had compassion. This app helps doctors see your pain- by showing them your journal they feel more like you are not just drug seeking. Hope this helps you. Welcome to our group.

Jun 09, 2015 5:49 PM

That is true. My pcp said only pain management clinic now can determine meds. They want me off all together. I have to finish the management classes before my pain Dr will consider. I have 3 more classes to go.

Jun 09, 2015 6:17 PM

RedefiningLife, first I want to welcome you to our community family. There are MANY people here who suffer on a daily basis from one type of disease or another but we all have horrible pain in common. I understand what you are telling us about the doctors trying to get you off the pain meds. I went to my pcp and he had been giving me bottle after bottle of Vicodin with several refills every month. My pain levels are normally around 8-8.5/10 and that is ON my medications (Morphine and OxyCodone for breakthrough pain). My pcp sent me to pain management and that was 22 years ago. I never had "classes" so I am not familiar with that part. When I first started going, I was given physical therapy, biofeedback, relaxation exercises, massage therapy, anti inflammatory medicine, nerve pain medicine, and went through a few major surgical procedures to try to help me. After no relief, I was given pain meds. Over the last 22 year they have been increased a great deal and I think the average person would die if they took what I do. My doctor always dictated notes after my visit stating that my urine tests have always been absolutely the correct levels and that there has never been a reason to mistrust me. (They also said that since I have such widespread pain and can't work or function properly, the amount of pills I am on is appropriate). I know it is very hard to deal with when you are in such pain and can't function, remember things and lose interest in all the things you used to love to do, all because of the God Aweful pain. Try to hang in there, show him your pain diary and this way he/she can actually SEE your pain and the severity based on your chart. Then, take it from there. They will probably start you on low doses and then check on you for any signs of improvement or no changes at all.Then they will change one or the other (or both) until they find a combination that works. I don't how long you've been having a problem or if your doctor (pain management) has given you information on an implanted neurostimulator into your spine. It gets implanted just above the area where your pain starts and then there are wires and a battery and the entire system is implanted under your skin. It takes some time to heal (about 6-8 weeks and then they start making adjustments to the levels of electricity you can use and also show you how to make these adjustments yourself). Now. before they do an actual implant they do what is known as a "trial" implant and let you have it running and there is a wired remote control that you turn on and it is supposed to help you feel better.. If it doesn then they go ahead and arrange surgery to implant the device permanently) I don't know if this info has been helpful. I hope it has. I am sorry that there is so much to read. Just thought I would let you know how the process is done and maybe, armed with this information, you can get better results when you go to pain management.

Jul 10, 2016 1:53 PM

Thank you for your response. I know it has been over a year, but I wanted to update. I'm on 25mcg fentanyl patch, 5mg oxycodone, Lyrica, and trying rounds of prednisone for joint pain. My doctor wont go up on any of it. I can barely afford Lyrica and I heard of a program to get it free. I had denervation in low back which helped for a couple of years. All of this makes life tolerable, but any activity causes me to use more oxycodone than I get in one month, so I have to ration it and limit my activity. I have no libido which is strains my relationship with husband, so I have tried to reduce pain meds. I also have loss of cognitive functions like memory loss and fogginess, in additon to fatigue. The neurostimulator sounds interesting, and i will do some research on it. I use a tens unit, but difficult to put it on my low back. I have dr appointment in one month to be able to just keep on meds I'm taking. I dread this because i have to justify my need. I will bring my pain journal.

Jul 10, 2016 2:06 PM

I have a lot of rib pain with lupus. Have you been tested for lupus?

Jul 10, 2016 2:45 PM

Is there a specific test? I get all the regular tests which results are normal range for kidney and liver functions. I have often thought i might have lupus because of the pain in my insides in addition to the typical fibro pain. I will ask my dr when I go next month.

Jul 10, 2016 2:46 PM

Hello RED and welcome to this fab app... and awesome community here already 🌷

Sorry to hear ur struggle sweetie... Alwayz gave an excellent reply. Its a bit diferent here with πŸ’Šmeds... they cant throw enuff at me from my GP/PCP to my pain management team... but the left hand never speaks to the right at times here too... its the luck of the draw 🐫

I hope u can get someone to listen to u soon... until then, post anything u feel, or questions u have... someone is always about... even if its just to give u a gentle hug πŸ€—

We understand and do not judge πŸ˜‰
& have great ideas and advice, for how to cope until ur next appointment 😊

🌹 Welcome gentle hugs lulabel xπŸ”

Jul 10, 2016 2:49 PM

Thank you. You are very encouraging. I appreciate your response.

Jul 10, 2016 3:06 PM

No tests are definitive but there is blood work like ANA. RA factor and others I can't remember right now. You basically need 4 of the 11 criteria to be diagnosed. Do you have joint pain? I had positive ANA 3x but because all other bloodwork was negative they blew it off saying it was false for 2.5 years meanwhile I was getting sicker and sicker. I had seen 2 Rhumies, an ENT, my GP many times and a year at a pain clinic. Finally one day I went back to the GP with a locked jaw. In last ditch effort to open his eyes and get some help. While there my fingers turned blue infront of the doc. It was Raynaud's. He finally believed something more was going on with me and referred me to an Internist. The Internist took one look in my mouth and knew I was sick. He felt swelling all over where I was told there was none. I had about 8 of the 11 criteria for lupus. How the other specialists trained in this area missed all of it is beyond me. I also have sjogrens and they strongly suspect Scleroderma although I REALLY hope not. Everyone presents different so it's hard to diagnose. For me it was joint pain everywhere that spread and got worse fast, ana positive, seizures, Raynaud's, protein in my urine, mouth ulcers, sun/ heat sensitive, lost my bladder at 28 (now 45 and just diagnosed 3 months ago). Fatigue. Some have a butterfly rash across their face and nose. Don't give up finding answers. You could even ask to be tested for lupus and RA

Jul 10, 2016 3:10 PM

Write down all symptoms even if you think it's nothing. I had a lot of weird things happening for years out of nowhere like swollen painful taste buds, cracked ribs, flushing burning facial nerve pain, infections..

Jul 10, 2016 3:14 PM

Hi Gibbers 🌺 thanQ for sharing this post. I have MS but i have often wondered how they dx lupus...

#stilllearningsomethingeveryday

🐫 thanQ ⚘

Jul 10, 2016 3:16 PM

Your very welcome. MS is a daily battle to eh? How are you doing?

Jul 10, 2016 4:40 PM

Im ok thanQ for asking 🌹 all the better for u asking thanQ 🐴 i hope ur day is easier than ur last... for that i would be greatful πŸ” πŸ“ Hows things ur end sweetie?... im so slow to type today...🌷 apologies

My MS sorta faded into the background a year ago... when a butt load of spinal dx fared its ugly head again! (Not literally my butt...but close enuff lol🐴)

Lmao... dear me... then the NHS totally flicked me over... so i had to go elsewhere just to get treatment... from the same flickin' pain consultant... and after 8months of treatments... i have bΓ¨en passed back to the NHS... (yes he refered me to himself 🐌*sigh*) to his other pain team.... but my neurologist still hasnt even refered me!) Good old NHS πŸ˜‡

That being said... this pain consultant...(my pain consultant of 10years+)...is my McDREAMY! πŸ¦„ (Gray's Anatomy ref πŸ˜‰)

He is 6feet2, athletic, salt n pepper blonde haired, blue eyed consultant... from Germany ;) ...whom actually looks u in the eyes and listens and repeats what u said to confirm... then explains why it s happening and what we can do to manage it!

His English is perfect... and he blushes when i point out how easy he is on the eye lol... i dont get out much what can i say! Hehe.. the man is like gold dust! Oooooo hark at me swooning over McDreamy... oooo_lala! (Be rude not toπŸ˜‰)

I hope it made u giggle readig that... lol ...keep a moment in every day... just to laugh at the utter hilarity of my life...i could write a script for Eastenders, and base it on the truth!

πŸ˜™anyhoo have a good evening 🐧

KEEPING the spirit of COMEDY
on a Sunday night! 🐫
🌹🌹🌹🌹🌹🌹🌹🌹

Jul 10, 2016 5:16 PM

Ahaha! Well at least something good is coming out of the pain. You might need to go to that clinic a little more often for some McDreamy therapy! Lol Is there a Med docs can take to treat their "pass the buck syndrome?!" They're brutal. Glad you're hanging in there. I am too. My business is taking off and I'm busyier than I've been in years. The lupus diagnosis made me go after my dream and start this business. I know crazy but it's mostly my sanity doing what I love.

Jul 10, 2016 5:19 PM

What do u do?

Jul 10, 2016 5:27 PM

I make soy candles, wax melts and lip balms. I have my stuff in one health food store and they're selling like crazy, and on Monday I've got it going into a major retail store in Canada which I hope will lead to the whole chain across Canada.

Jul 10, 2016 5:31 PM

Woooooo.... get u taking over the world, one step at a time! That is AWESOME! Keeps u out of trouble... and one day u will ne a millionairess! Well done you! I feel proud to have met u! U must be exhausted sweetie 🌷🌷🌷

Jul 10, 2016 6:03 PM

Awww you're so sweet thank you! I won't lie I'm exhausted this week but I feel honored to be busy. Wonderful to meet you too! Are you on Fb?

Jul 10, 2016 8:29 PM

Often with lupus there is a rash that is on your face. Referred to as a 'butterfly mask' because of the shape as well as significant sensitivity to sunlight. This often runs in families and is more common in females. When I was a child I was told my Grandma was allergic to the sun...she has lupus. It is worth mentioning to your doctor.

Jul 10, 2016 8:33 PM

I've never had the butterfly rash. For that I'm grateful.

Jul 10, 2016 8:49 PM

From WebMD
What Is Lupus?
Lupus is a lifelong disorder of the immune system. Immune cells attack the body's own healthy tissues, leading to inflammation and tissue damage. Symptoms may be limited to the skin, but more often lupus also causes internal problems such as joint pain. In severe cases, it can damage the heart, kidneys, and other vital organs. Although there's no cure, there are treatments that can minimize the damage

Jul 10, 2016 11:56 PM

Hey Gibber,
If you can, whats your brand and which chain?
We are not that far away from each other and I'll pick up your product if it makes it's way to Edmonton.

Jul 11, 2016 2:26 AM

Morning! Sorry i fell asleep last night, exhausted... Gibbers ...i dont do facebook anymore... i had a six year stalker experience that kinda ruined fb for me... lol my hubby cyber stalked me too. Its just easier not to... i do have skype... but fb is the devil lol xxx

Jul 11, 2016 2:46 AM

I know most of you know how I feel about pain meds. I've even had a few back and forths with some of you. I've been to several pain clinics, doctor's and all the tests we've talked about. I firmly believe it's the documentation and then the right doctor reading it. I had a specialist in town from Californi that diagnosed my Arachnoiditis. That's what saved me. I've been through the injections and too many surgeries to count. But with that one diagnosis I get my Lyrica 100 mg 3x day. Oxycontin 80 mg 3x day and Oxycodone 30 mg. 2 every 4 hrs no more than 12 a day....it can be done. I know the vicious cycle. The more you take...eventually you'll need more. Once it's TOTALLY under control....then work on cutting back. I also get Lorazepam and Temazepam. It's all about the right doctor, right tests, right documentation and right diagnosis.

Jul 11, 2016 8:09 AM

Gotobef that's very sweet of you thank you! It's Sparking Hope Candles.

Likable no worries. I hope you slept well! Sorry you got stalked that's awful.

Jul 11, 2016 8:47 AM

(This post has been deleted because of violation of our user policy)

Jul 11, 2016 11:04 AM

Truth is, if you're on the max dose and running out each month, you're probably not on the right medication. As much as we wanted our pain to go, if we're not on the right medications it won't help anyway. Unfortunately it can take a long time to find the right combination of medications to help you because everyone reacts differently to different drugs. It's also a balancing act of drugs, physical and psychological therapies often. I'm Quadriplegic and still do physical therapy at spine rehab, I can't really do much with my body apart from very limited movement of my arms but if I don't exercise them and the rest of my paralysed body it gets worse, I get worse muscle spasms and chronic spasticity, so even taking my medications on there own wouldn't combat the problem, I have to exercise my body too. There is always something we can manage to do. It's about trial and error-experimentation and open mindedness 😊

Jul 11, 2016 11:09 AM

I was in the same boat, so I had to be hospitalized to titer my meds down. I am in terrible pain but am doing the best that I can.

Jul 12, 2016 9:18 AM

RedefiningLife, I'm sorry it's taken so long to get you on meds that actually help you cope better. Like jahmac said, you may not be on the right meds. Maybe this pain clinic will be just what you've been needing.

I can't take a lot of pain meds due to allergies, so every day I deal with pain until it reaches 7-8 level, then I take the tramadol. The stronger meds like hydrocodone are reserved for surgical procedures only. I do warm showers, gentle stretches (suggested by a community member), relaxation (also suggested), pacing & testing, use voltaren pain gel, and Tylenol arthritis daily. Hugs love & prayers everything gives you better coping methods through the pain clinic! πŸ™‚πŸ’•πŸ™πŸŒΈ

Jul 12, 2016 9:58 AM

All those things work. Tylenol, heat, massage, and rest. However, sometimes pain meds are warranted, I do want to say all the pain meds in the world will not make you pain free unless you no longer want to be on this earth but really, isn't life worth the fight? I hope today each of you find a reason to say YES, YES , YES!

JudyLynn🌸

Jul 12, 2016 6:15 PM

Ask your doctor if you can take motrin or aleave to work with your current meds to improve the effectiveness. I know trammadol and motrin worked better together.

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