Quantcast

Living With Fibromyalgia - Online Support Group

Frustrated with doctor/ pain

#1

Hi! I hope everyone is surviving the winter. I, for one, am really having trouble with Fibro flares. I always ache a little but if the weather changes at all, which is almost every day, I have a flare. It seems if I lay on the couch and don’t move a muscle, the pain decreases a little. But if I move, immediately the pain shoot up. I was diagnosed in July so this is my first winter and I’m still also learning about how Fibro effects me.My iPad will not let me put an “s” at the end of shoots. Anyway, I can relate to what people call Fibro fog. I have it every day. What is really weird is I feel hot a lot of the time. I don’t know why. And I’m gaining weight from inactivity. And has anyone gained weight using Gabapentin? Oh, and listen to this, I saw my rheumatologist last week who didn’t help me at all. Then I went online to review his notes about me. He made about six or seven discrepancies about me. I called the manager who was nice but really couldn’t do anything. Now on Thursday, with pain, I have to drive 11/2 hours and go line by line and make the doctor fix the incorrect information. And he even included false information about conversations we had. But really didn’t have. I’m sorry if I’m just complaining. I’m really frustrated. I bet many of you also have stories to tell. Thank you for listening.:wink:

1 Like
#2

You are having problems with a dr and are frustrated… …I can’t think why!!! (Joke)
Some dr’s would be great in a lab working with mice because they have no people skills at all. I can assure you, you are NOT alone with dealing with dr’s. Not at all. Some dr’s make out they know all about it and loose their focus on the patient and it can be SO frustrating.
You’ve spoken to the practise manager, so they are now aware of your concerns. If it happens again, repeat your complaint and keep a record of you conversations with dates/times. They can only act if they are informed. If you feel that your concerns have not been addressed, a complaint can be made to your state’s medical board.

Many of us do have some very similar stories, but often our complaints are swept under the carpet or minimised by the practise. But if others have made similar complaints to the medical board there will be a record. Those records can be used to show a pattern of behaviour if/when others complain.

Merl from the Moderator Support Team

#3

I am also having severe flares this winter. I was diagnosed in December and I was blaming all my pains on my back issues and my surgery last year. It’s nice to finally have a diagnosis that makes my pain make sense, but it’s no fun having the pain and other problems.

Like you as well, I have fog problems. I hear my husband say something, but I can’t process what he said. It comes out jumbled. I answer what I thought I heard and then we spend 15 minutes trying to figure out what the real question was. He knows what he asked and tries to ask it differently.

My rheumatologist has no bedside manner, but I trust her. Can you find another specialist? It’s hard to find corrections for your problems if your doctor won’t listen to you.

Best of luck!

#4

Goodness , that would be frustrating…

I do not look at the online stuff, maybe thats just as well :flushed:

I find miscommunications are more the norm than not…

Winter is very hard on this issue…

You need to learn ways to help yourself , as well as how the dr can help…

I cannot tolerate a lot of meds, so topical pain relievers help me on the side of meds…

Also my fibro tool box is pretty full… a tens unit is too strong for my muscles but a microcurrent unit helps me a fair amount. I also use home laser treatments

#5

Thank god I have a doctor with fibromyalgia so he is up all the latest treatments I get a lidocaine IV every 4 weeks and yes this winter has been hell cant wait for spring hugs

#6

Dear Freedom, so sorry you are flaring. You will find as you read here that all in our community experience the same problems and situations. We are all on different clocks and schedules and rythyms but still more alike than different.

I find solace in knowing i am not alone, others are in the same shoes. I got so accustomed to others’ incorrect assumptions that it was my imagination or all in my head . . .

My GP is sending me to a different rheumatologist and my fingers are crossed. After so many dismissals by so many doctors, i am discouraged.

If it helps you, i have had 2 really wonderful days: june 5, 2017 and january 8, 2019. I felt like a normal, healthy, happy person. It is possible, but it does not stay.

I find that if i can get up at sunrise and face a window for 30 minutes, i can have a pretty good morning and my brain works well enough that i can even balance my checkbook. Until 1130am then all downhill until bedtime.

Hoping your days will improve as springtime approaches! ra:):turtle:

#7

Thank you to all the people who have responded to my complaining. And thank you for your suggestions. Fibro is so weird I was ok yesterday morning then in the afternoon the pain really started. By night I could hardly walk. That lasted until about 1 pm. Then the pain got a little better enough that I could drive and get to two appointments. Now I’m tired. It is nice to know you’re not alone.:blush:

#8

I understand your frustration. There are greater than 100 identified fibro symptoms and the list grows longer every year. No matter how much medical professionals understand about the disease, living with fibro is the only way to truly comprehend the debilitating effect of the symptoms. I’ve lived with fibro since 1991…pain, exhaustion, fibro fog, weight gain, etc. are a part of my daily life. The cycle of symptoms/weight gain/frustration continues. I wish I could offer more than understanding. My heart goes out to everyone on this site…and I’m grateful you’re here. Blessings!

#9

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.

#10

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!!!

#11

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.

#12

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:

#13

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

#14

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.

#15

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

#16

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.

#17

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.

1 Like
#18

Thank you to everyone who has responded to my post.

#19

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!

#20

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: