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Living With Fibromyalgia - Online Support Group

Frustrated with doctor/ pain

I started to chuckle when I read your comment. I so identify. I do have days when I start the day really feeling good, and by the end of the day–I really hurt. I have also had days when I start feeling also and by afternoon I am feeling fine. Winter is very hard. The three things that really get to me are cold, wind, and a drop in the barometric pressure. I have had fibro for for years, and it is just as frustrating now as when I was diagnosed. One thing I tell myself is this too shall pass. I know it will change. Sometimes I get frustrated because I make plans with friends and then when the time comes–I have to call it off. That is something a lot of people don’t understand. Learn to enjoy the good days.

That is really terrible about the doctor falsifying your medical records. Perhaps in the future you should remind the doctor that you will review what he or she writes via my chart. That way this may be prevented from happening again.
Part of the issue is that medicine as we currently practice it, has little recourse for chronic pain. With the opioid crisis they are being scrutinized big time to limit opioid use to the 1st month or two of tissue damage. But after that, there are not too many choices… Hence, chronic pain patients are rushed out of the office or referred elsewhere.

When pain hangs around for more than three months (as with fibro labeled patients), it is not pain anymore. It is called chronic pain and odds are it has nothing to do with the original injury. The pain has gone “Lymbic” so to speak and that means the limbic “fight or flight” part of the brain takes over and modifies the pain, making the location spread and the intensity worsen. This is why they try lyrica and valium and buspar and any other any anxiety meds available. Amazingly, they help. Why, because they are mean to quiet the fight or flight response which is driving the pain to continue. Of course, the meds wear off and you have to take them again.

Frustrating for the doctor or physical therapist and frustrating for you as well.

The only thing that has shown to improve outcomes with fibromyalgia labeled patients is…EXERCISE!

And exercise increases oxygen consumption and that bring blood and oxygen to the tissue and that feels better until you rest and then the lactic acid forms in the tissues again. But still. even if it is just walking briskly or walking in a pool back and forth, it is worth doing. And remember this absolute fact…increase pain does not mean increased tissue damage. So you are not hurting yourself by getting up and moving. 5 min the 1st time, then 6 min, then 7 then 8 then 10 then 15 min. by the time a month goes by you are walking for an hour .

Breath deeply and let it out slowly. This calms the nervous system down and also gets increased oxygen into your tissues and this helps you to feel better.

I work nearly exclusively with pain in my 40 years of practice so I hope this info is helpful. Let me know what you think. Have a better day!!!

Hi Tom and Ruth! Thank you for responding and with a wealth of information! Tom, you said to exercise. If my pain is an 8 or 9, do you recommend getting my butt off the couch and doing a small amount of exercise? Even when it hurts like crazy to walk? I just want to lay still and not move until the pain gets better.

Hi again! My iPad cursor would not move. Crazy iPad. Anyway, my body says “ STOP” and go lie down you hurt! Are you recommending to go against my feelings? I will if that will help. By the way, I scheduled myself with a new rheumatologist who does know about fibromyalgia and has many fibromyalgia patients. Do you know or has anyone gained a lot of weight taking gabapentin? I take a total of 1200 mg a day. Hey everyone! Spring is just around the corner!!!:cherry_blossom::hibiscus::bouquet::slightly_frowning_face::sunny::rainbow::sun_with_face::rose:

How did that frowny face get in there? Oooops!:laughing:

Hi There, I have been reading this thread and watching the posts, and at first I wasn’t going to reply but then I thought what if I was someone in that position and there was someone who was at a pain level at an 8 that got up anyway and did something even if it was to walk to the kitchen and didn’t say anything just to say that it could be done. So I just wanted to to tell you that everyday of my life I live with four chronic pain conditions, Lupus, Fibro, Nephropathy, and Osteoarthritis in several parts of my body. I have needed left hip surgery since April of last year and have not been able to get it due to the fact that I have no one to help me. My pain level never reaches below a 6 on a good day. So yes even when I am at a pain level of 8 I take my dogs to the dog park, no matter what. Even when the I feel that the whole world is crashing down on me and I can’t even process a thought I talk to my dogs just to hear a voice.
I call one friend who is understanding who helps me through my “fibro fog” when I can’t process my thoughts she helps me with them so that I can feel somewhat normal.
I have learned not be a victim to what I have no matter what. It is the most diffacult thing in my entire my life that I have ever have to dealt with. I have had to give up my career at 35 years old, stop playing softball, stop bowling, stop riding a bike, I can’t be in the sun for longer 15 minutes, I can’t drive in a car for longer than 20 minutes without my legs tingling, I can’t even wash a coffee cup without extreme burning in my left shoulder blade.
To be honest with you even while I post this I am at a pain level on a 9 in my left should blade with the burning underneath the skin but I felt it was important to let you know that if I can do it every day so can you.
This is how I do it:
I can’t do it for a whole day, a whole day is way to long -
I can do it for this moment and this moment only just this moment I can take a breathe and focus on what is front of for instance this post. For just this moment I can forget about the pain and focus on maybe helping someone else not feel alone for just this moment I can focus on maybe letting someone know that there is someone else out there that on a daily basis goes through exactly what they go through and gets through it for just one moment.
Yes, just get up and walk to the kitchen, go outside, or just stand up and water a plant. Do whatever you have to do for that moment to forget how much it hurts and don’t lay down and allow your illness to be better than you.
I hope this helps, and I hope that you find a different doctor and if the new doctor is not comfortable for you find another one. Find one you comfortable with that listens to you and treats you and doesn’t medicate you.
Another suggestion, I have been on every drug on earth I don’t suggest Gabapenin, it is a horrible drug, it works for very few people. Good luck. I hope this helps.

Freedom,
I completely understand being frustrated with doctors. My doctor told me on my last visit that he just did not know what to do for me anymore. He said over a month ago that he was going to get me in to see a pain specialist, but still have not heard anything. I have been put on so many different medications since I was diagnosed back in Oct 2018.
Life has gone from working 50 hrs a week to not working at all. This winter has been hell on me and the only thing that helps is sitting in my recliner with heating pads and several pillows. I cant wait to hear something from my doctor

If you want my suggestion based on my experience don’t wait for the doctor. Call them every other day and ask them if they put in a referral for a pain management doctor. I finally had to ask to go see one and it was the best thing I ever did. It changed the quality of my life. Don’t wait for the doctor’s call them and ask them what the status is.

Hi ksbeirman24! I hope I spelled that ok. Thank you for taking the time to respond to my post. I had a headache today that lasted about 10 hours. I’ve been in severe pain all day. But I read your post and got off the couch and got dressed and bought food, balloons, soda, cups, plates and fun things to give the Aurora police department for their incredible and difficult task they had to deal with last week. In pain, I got off my butt and did something. Yes it hurt like - - - -. Tomorrow I will deliver it if I’m in pain or not. I don’t tell you this to sound like a hero. I’m not a hero. I just stopped thinking about myself and thought about other people. And I’m thinking about you too. You inspired me. You have been through so much and keep on going with a positive attitude. I don’t hear you say conquer the world and suffer through it in pain. You said just do something every day even if it’s watering a plant. I sincerely hope you find someone who can help you so you can have surgery. Thank you again.

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Thank you to everyone who has responded to my post.

Freedom, can you see what doctors participate in you medical plan by looking online? Or maybe call your insurance company and ask for names? I didn’t wait for my PCP to refer me, I found someone and looked for online reviews then asked for a referral. It went very quickly and smoothly for me.

Best of luck to you!

Hi Freedom, thank you for your post. I read it this morning and you have no idea how much it meant to me. Iam so glad to hear it. Amazingly enough though today was one of those days that I just wanted to come home and lay on the couch and hide from the world. You see a few weeks ago I was tarping my shed getting ready for the rain and I was drilling a screw into a facia board and all went well for the first two screws then the third one I felt my chest crack. I have never ever felt pain like that in my life tears came to eyes and I prayed the St. Francis prayer and finished the screw and went to the next one and said forget I had a chest x-ray it showed nothing, I had a CT scan and it showed nothing, and in the meantime it wasn’t getting better. The pain in my upper chest was excurating I kept on day by day one moment at a time and finally my doctor ordered an MRI I found out that Radiolist have specialities as well so I called around to find an imagining center who had a specialist for this type of MRI. I found one 26 miles away from my house. I went this morning and had it done. It was the worst of my 43 MRI’s. At any rate I had an appointment with my pain management doctor who looked at the CT report which showed that nothing was wrong and determined that well sorry it’s either steriods or anti-inflamitiories because he was frustrated. I got the results of the MRI after Ileft my doctor’s office and guess what there was something wrong. I have a fractured displaced sternum. Now why this didn’t show up anywhere I don’t know but don’t think I didn’t take that report back to my doctor’s office took my dogs to the dog park and decided that I was going home and hiding because I just couldn’t take anymore.
When I got home and after I fed the dogs I looked at my dishes that I have not been able to was for weeks since it happened except for one coffee cup I thought of your post. I thought you got up…you thought of someone else…despite the pain you got up.
So no matter how much it hurt I washed the dishes because if you could try and get up and you got up then I can at least wash the dishes.
So thank you so much for your post it’s not becuase you are hero it’s because you are not a victim it’s becuase you want your life back and it’s becuase you can. For just that moment. I don’t think you are hero I think you are amazing. I think you have strength and courage. Thank you for helping me wash my dishes. I am sure tha t not only did the police department appreciate it but Iam sure that you felt better. :):blush::smile::smile:

Hi ksbierman24! I can’t believe it has taken this long to respond to your… ok, so I’m not a techy person. I’m not sure what these responses are called. I know they aren’t called emails. Anyway, I’m very proud of you for continuing to pursue getting the answer to why you were having chest pain and for pushing yourself just a little bit to do your dishes. When you have Fibro, that’s like conquering a mountain! I just saw my third Rheumatologist. The first one told me, after my third appointment, that she really doesn’t know very much about fibromyalgia. Great! The second Rheumatologist wrote incorrect information about me in his notes stating that he talked to me about stopping taking narcotics and that I agreed to this. I don’t take any narcotics! I never have for fibromyalgia. I don’t have them in my house! I took two Tylenol #3 over a year ago when I had oral surgery. So two weeks ago I saw a third Rheumatologist. She seems ok. I see her again at the end of May. She increased my Gabapentin to 600mg three times a day. My iPad is acting funny. Thank you ago for your inspiration. Jean

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I have had fibro for 40 years. you will find my "stories"on other threads. My pain is out of control and my GP wont help any more. my ortho wont help. I’ve been sent to my 3rd pain clinic Dr. in November 2018 and had to sign a contract like a convict for random UA’s blood, etc. to get 4 Norco per day. This next paragraph is copied from one of my threads and posted by administration “The key word being RECOMMENDED. Yes, guidelines and recommendations have been made and should be made, doctors don’t get enough instruction on pain management in the first place. This is all good. The problem is like with clinic you’re going to, the doctors and clinics are taking it to extremes, making up their own rules, and lying to patients telling them the recommendations and up-training are government laws when they are not.” That thread is closed. I live 20 miles from our capitol in Nebraska. Population is over 260,000 people there are SEVERAL pain clinics. There is no getting around this random UA’s and pain contracts. Regular GP’s are adding a pain doc to their staff, even MY GP who sent me somewhere else. This is NOT “good”. This is NOT helping patients, its a medical money scam for doctors and there is going to be a time that medicare and medicaid are NOT going to pay these monthly $150 bills. I have to have my blood pressure taken, no doc anymore, I see the PA who relays the conversation to Dr. Then a 20 mile drive home and wait for the fax to hit the pharmacy. I have a friend who has MS and was taken completely off Tramadol because she might get Addicted. She is in her mid-80’s and they are afraid three Tramadols a day will make her addicted. So what? its the ONLY thing that gives her relief. I made several calls earlier this week to various doctors and clinics, but all 5 gave me the same answer. If you are going to a pain doctor NOW, we will not take you. I, like most of you, have chronic pain 24/7 and my only choice is random checking on me until they decide I am addicted and take my only help away, or leaving the doc right now. I have tried every med under the sun, and Norco is the Only med that helps. Admins post mentioned that CBD oil is not illegal in my state. Well, the pain contract does not allow it, and yes, it will show up in my blood test, so law or not, i can’t use it. Yes, I am angry. I am frustrated. This is a wonderful site, but even administration seems to be against me in this. Drug use is still going on at a high rate on the street, by addicts in the gutter, by mob sellers and dealers, but regular people like us are taking the brunt of getting rid of narcotics. I do not sell, crush & snort, inject or take 3 at a time… i take one pill 4 times a day, 6 hours apart. I AM angry. I hurt.

I’m pretty angry also. I just signed my opioid contract day before yesterday. I filled out the questionnaire honestly. When doc came in she very sheepishly told me that my score put me in the “high risk” category. High risk for what?! I asked. Addiction and overdose.
Now, I have been taking the same 1 Tramadol a day for 3.5 years, with a second one maybe 2 days a week. I get a script for 120, 50mg pills about every 3.5 months. I have been seeing the doc for 6 years. She knows me. She knows I’m not an addict and don’t have an addictive bone in my body. That did not keep her from writing my a script for Narcan. NARCAN! I had to go to my local pharmacist, who now believes my dr thinks I need meds to save me from an overdose. In my town of 2000 people there is 0 chance that it will stay private. I feel very violated by this.

Zananne - in November, i started on Naltrexone, same deal, to remove the opioids from my body. I have not heard of narcan so looked it up. " Narcan is the brand name for a drug called naloxone that block the effects of an opioid. … Opioids like heroin bind to opioid receptors to relax you and essentially slow you down." What is going on here?? if you are taking one tramadol a day, that is similar to someone taking 2 ibuprofen a day – i don’t know how old you are, but the main idea behind this is for the government to get the people 55 and over off all narcotics, even if the pain kills us. Are you still allowed the tramadol and use the narcan as a backup. Or like me, are they tapering you off and taking away your pain relief. High risk Category sounds very stupid to me, no wonder you are frustrated. All I can do i sympathize and empathize with you. Please keep us posted. or send me a note. Carolyn

Carolyn,
I’m 48. Narcan is used by EMS and other first responders to bring someone out of acute overdose. It is mostly used for heroin addicts, I think. I am mortified that my pharmacist may now think of my as an addict. I work in the local school system and am afraid that the small town gossip will cost me my job.
Mostly I guess I feel sad and frustrated by the system whose intent is to help people who NEED help, but whose design and implementation is so poor that those people don’t get help and chronic pain patients are labeled high risk users.

Zan - That is TERRIBLE. that is given to you to get you OFF the tramadol. This is all part of fighting the Opioid Crisis. You and I and millions of folks with chronic pain are going to lose the one med that helps us. Believe me, the cartels will continue sending narcotics across the border, gangs will buy and sell, all the criminals and also college age kids who think its cool, will still get the meds. They are not used correctly, so some die from it. Did your doctor tell you that she wants you to stop taking tramadol or that she is not going to refill? Its not even safe to take those two meds at the same time. I did call my orthopedic who MRI showed that I have pain coming from my collapsed vertabrae and herniateed discs and even HE said “I can’t see you again. You have a pain doctor”. Please tell us, are you no longer able to get the Tramadol?

Carolyn, My doctor did refill my Tramadol. And she said she will continue to. She knows that I am not actually at risk of an overdose, but the law says if you score a certain # on the questionnaire, they have to write the prescription for the Narcan. The Narcan is not to take with tramadol, it’s only to be used in the case of an overdose. So the questions I answered honestly apparently gave the very wrong impression that I might take too much tramadol, overdose and that my family might need the Narcan to save my life.

Oh, this just makes me nuts!! I have read numerous articles that are talking about the over correction doctors have done in an effort to try to reduce the opioid crisis. The articles are saying that people in real pain are being denied medication and that was never the intent. This pendulum must swing back some the other way.
I, too, was forced to go to a pain clinic, fills out gobs of paperwork, complete multiple questionnaires, sign contacts, submit to peeing in a cup… all so I could get 7 Norco for a month! Then, it got increased to 15. No matter, I’m not finding opiates (at least not narco) helpful for fibro pain. Not opiates, or NSAIDs, or Tylenol, or gabapentin or lyrica! Fibro is evil!! I just quit lyrica without telling my pain dr first so will probably get kicked out of the program.