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jayelle

New member
Joined
Jan 28, 2014
Messages
3
Reason
Undiagnosed
Diagnosis
01/2014
Country
US
State
CA
Hi everyone. My name is Jayelle and I'm new here. As you've guessed, I'm also new to fibro...or at least having a diagnosis.

Has anyone else had a hard time just getting a doctor to listen to you? I've been told everything from, "Well, we can't find out what's wrong so we're not going to do anything for you." to "There's no point in finding out what's wrong." Yes, that last one is a direct quote. A doctor actually said that and then sent me to physical therapy stating, "the only treatment for back problems is physical therapy." The physical therapist just about had a stroke when I told him what she said. He also said that my problem wasn't muscular and that I needed to see someone for skeletal or nerve pain.

Well, now the pain isn't only in my back anymore, and I realized that I had to tell my doc I don't want pain meds so she would take me seriously. That was about 5 months ago. I wasn't diagnosed until this month when I brought a friend with me who also has fibro. My chiropractor had suggested that might be at least part of my problem "along with an overactive sympathetic nervous system between the neck and tailbone" and undiagnosed scoliosis (even though you can plainly see that my spine is curved, I have yet to convince the doctor to even look at it, so I'm not diagnosed).

*sigh* My fibro has progressed a lot over the last year and I've reached the point where I can't think clearly, and I've had consecutive days with high pain levels I never knew that pain alone could be so exhausting, or that it would be so consuming. I've even had to go to the ER a few times (but, there's no point finding out what's wrong, right? grrrrr!).

Oh there is so much more to say but I don't want to go overboard here. lol I just want to say that I thought I knew what pain was. Even as little as 1 1/2 years ago my whole thought process about chronic pain was completely different.

There is no illness or injury that I have had which could've prepared me for what I'm going through now. I thought I knew, but I didn't have a clue. Two weeks ago I had such a bad pain day that it took me 20 min to convince myself to get out of bed and use the bathroom (the toilet was only 5 feet away). I just hurt so much, I couldn't do it. I mean, I eventually did get up and go. But, it took far more effort than a simple trip to the bathroom should be.

I just can't wait until I'm finally on something that can help. I didn't lie to my doctor; I really don't want to be hopped up on pain meds. But, it's my understanding that there are medications that can help and aren't addictive pain killers that knock you out. I have 2 special needs children and a husband about to go on deployment (Navy) next month. I need to be able to be aware and functioning now more than ever!

*hugs* Thanks for listening to/reading my rant. I guess...I just need to know that I'm not alone with the whole being ignored thing. It's really gotten to me.

~Jayelle

PS I should add that I think one of the reasons that I was ignored is stereotyping. I'm a hippie with long colorful dreads and I can only guess that the doctors all assumed I was drug seeking.
 
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Javelle welcome to the forums. It's frustrating to feel ignored by the dr and I think most of us have probably been there more than once. Best of luck to you and check in often, there are a lot of great people here.
 
Hi Javelle, i understand the need to function and not be willing around in a drug induced gaze. I take a very large cocktail of medications trying to relieve the myriad of problems I'm experiencing. The one thing that works the best for pain relief is medical marijuana, seeing as you live in California, that shouldn't be too hard for you to get. Do some research, there are two key ingredients, one is THC, the other one is lost in the fibro fog at the moment. Anyway the THC, is the one that gives you the buzz, the other one, is the one that relieves pain. So if you can get one with a low THC value it should help with the not being buzzed part. I found this information in an arthritis magazine and if it weren't for the fibro fog, I would be able to recall a little better information about it. So, do some research and you should be able to find the information.
 
Javelle,
Welcome to the forum. Since it sounds like your looking for some non-drug related pain relief I would like to offer a few ideas. May be you could try and find a good honest Naturopathic doctor in your area that could offer you some alternative options. Also be sure to read the posts under pain management and alternative methods. Read the older posts and the new ones as well.

Please do some research before you do or try any alternative therapy. Since you have two special needs children you have to be extra careful about the treatments you use, so that you can respond to their needs in a safe way. Members have offered many ways to help relieve pain without the use of any drugs.

Safety should always be your first concern. Many drugs are safe and do not make you tired. As you read through the forum you will find our members talking about the different medications and their side effects, so you can make good choices. :)
 
Welcome to the forum Javelle. I'm sorry you've had such a struggle getting someone to listen to you.

As I was reading this, I thought, to myself, get another doctor! If that's at all possible as, a good relationship with your doctor is important now that you've been diagnosed.

I know how you feel about the pain medicine. I have a prescription for Percoset, however, I only take one when I'm absolutely dying. A bottle of 30 last me roughly a year. Once, when I was in the hospital for bursitis the ER doctor refused to treat my pain with Percocet as, they're bad for people with addictive personalities. I was floored, I have an addictive personality? Some doctors just don't want to see the bigger picture.

I am jealous of your dreads. I had them for some time but brushed them out because I go through bouts of losing hair. When a dread fell out and left a hole in my hair I decided they had to go. I, too, was stereotyped as a druggy. Whenever I crossed the border, I was always pulled over for a secondary inspection. A border agent confirmed it was because of my hair and they were searching for drugs. They didn't believe me when I said I didn't do them. After I brushed them out, the secondary searches stopped. It's ridiculous really.
 
Hi Jayelle,

I can pretty much empathize and sympathize with you in every way. I too have been trying to get my PCP to listen to me about my various pains for years. He assumed however that because I have a history of depression, anxiety and ADHD that losing my job and having a special needs son (on my own) was causing the pain. Perhaps it is the fact that I am covered in tattoos and would go to the ER for migraines and end up getting treated with Dilaudid or some crazy mixture of Percocet and Valium but still be in pain which made him look at me like some untrustworthy weirdo.

Almost everything that I complained of he found a way to blame it on stress. He kept getting me to go see a counselor, I would swear the guy got commission. For example, he had also blamed my constipation a year ago on stress and prescribed Prilosec- that is until I went to a gastroenterologist who ran several tests, found it was IBS and prescribed a WICKED expensive ($600 my insurance pays!) IBS med called Linzess. However, that was just another idiopathic or "of unknown cause" condition to add to my list.

The ONLY Dr. who has listened to me thoroughly was unable to help me because Fibro was not his specialty. He took a history, listened to all my details, looked at my list of medications - none of them opioids - a veritable concoction of pills made to help every symptom of Fibro from IBS to musculoskeletal pain and nerve pain. He then walked around to my back, poked me with his thumb in a bunch of places and wrote up a referral to a Rheumatologist, saying I had Fibromyalgia. Of course a few days later when I told my PCP what he had said, he wanted me to go to a guy in HIS network, not the friend of the well-known Physiatrist who took me two months to see. He then asked how it was going with the counselor he set me up with.

The Rheumo was a jerk. He said I had "a few" tender points and then talked to me about seeing a shrink. He said something along the lines of it didn't matter if it was chronic muscle pain, chronic pain or fibro, but I have to strengthen my trapezoid muscles. No shit, dude. They've been in a spasm for more years than I can count, and now I am on a spastic muscle relaxer made for MS patients, and it doesn't even work on my upper traps along my shoulders. However, the traps along my back are jelly. My left one can hardly hold my shoulder blade in place. I've been complaining about this pain for years, but you, my Neurologist, my Pain Clinic Dr. you all keep sending me back and forth. They even stopped my treatment dead in it's tracks, when epidural injections and trigger point injections didn't work, to have a Neuropsychological Evaluation!

So, now I am supposed to start Physical Therapy and go swimming at the local YMCA (with all the extra dough from the job I don't have) while taking care of my sweet 5 year old special needs boy who is on his 7th IEP since he started school in the Public System about a year ago. I started Cymbalta a few weeks ago. It has seemed to help with my mood a little bit which is not the sunniest since the pain got really bad and the insomnia from not being able to get comfortable started. However, it has not helped with the pain or nerve pain/sensations yet. I plan on trying Acupuncture soon, but as you have recently discovered, it is not always easy to get up.

I am hopeful that there will be a day when someone will find something to help us. For me it seems as if everything I was ever given for the pain, even as a teenager, wore off very quickly, and then I grew an intolerance for it. The same thing does not work for everyone, and you will go through a good amount of disappointments before you find the right fit - much like falling in love I'd imagine. Feel free to message me about your concerns, your kids, or your bad days. This forum has helped me a great deal over the past few weeks, but we all need a friend.

Melissa
 
I've been seeing the same doctor since I was a young adult. He was reluctant to even consider what I was going through. His solution was recommending that I see a psychologist for the "mental" issues I was having. A couple of years ago, I stopped going in for checkups altogether. It was at the urge of my children that I went to a new doctor. She not only listened, but she is the first person to mention the word "fibromyalgia" to me. If your doctor is not listening, find a new one. Keep looking until someone is willing to take your health concerns seriously. You are entitled and deserve to be heard and respected.
 
It is absolutely disgusting how doctors are so quick to try to push their patients on to psychologists. Before my mother's official diagnosis she went through two doctors who lacked any real empathy at all and thought it was mental or something worse. Ugh, just thinking about it makes me want to punch a wall. The worst part is how some physicians don't even consider fibro to be "real" yet I wake up everyday to my mom's suffering.
 
Hi Jayelle!

Sorry to hear your doctor didn't take you seriously, I'm actually having the same issue with my doctors! I've been to 2 different doctors and so far it seems it seems they just don't take my hiatus hernia seriously. t sucks to know something is wrong with you, but your doctors are both too stupid and lazy to do anything for you! Bad doctors give up easily, finding a good doctor is so hard!

I'm glad you finally got your diagnosis... it sucks it seems we need to arm ourselves with a lot info and throw a lot suggestions at our doctors so they do their job. I often feel I'm pushing doctors to treat my health issues... like I have to guide them and push them in order for them to order the right tests and so on. So annoying! But it seems that's how it is with doctors!

Best of luck with everything Jayelle!
 
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