Frustrated, searching, angry

Status
Not open for further replies.

MsRant

Member
Joined
May 7, 2021
Messages
16
Reason
DX FIBRO
Diagnosis
10/2005
Country
US
State
VA
Heya. :) Rant here, new to the site.

I have been diagnosed with fibro since the early 2000's. I also have epilepsy and diabetes. The complications between them suck, but not why I came here today, at least. :)

Currently I am in Physical Therapy. My bicep has been have so many spasms and won't relax, which is causing some tendonitis, which is pulling on my shoulder and I have lost range of motion in my left arm. ok, cool, let's work on it and get me back to livable. I can do this!

Here comes my issue, my rant, my frustration, my tears. Been going about 2 months, things are progressing, the pain isn't better but the range is improving. A couple of times my regular therapist has been busy and I have worked with others there. Yesterdays appoint was with one of the others. I cannot say I am a fan of hers, but I am there to work on my issue, not make forever friends, ya know? But, then, I was talking about the pain, and the spasms, and she says..."Muscle spasms have nothing to do with Fibromyalgia". I am sitting here dumbfounded typing this, getting upset, again. The general ignorance of so many professionals when it comes to fibro. How can you treat me when you do not even understand what I am dealing with? I am very upfront about my bad experiences with docs and therapists who have hurt instead of helped me in my quest to keep my life working. I cannot let "professionals" push me till I end up in bed unable to move. How can I trust you and your advice and direction when you tell me I am wrong about what I live with every single day?

I have spoken to the office about getting set up with her, and others. I need a working relationship with health professionals I can trust. It's what I need to get my best positive outcome. I am going to have to say something again, and then I become the whining patient for advocating for myself.

It's disheartening. Stressful, painful, depressing, angering, everything I work so hard to minimize in my life. To get.."better". *growls*
 
MsRant...............I hear you!!
It is hard enough to deal with the pain we feel without having to try to educate people on top of it. Unfortunately, most people are ignorant about this syndrome and have no real idea what it is like.

I, too, have felt infuriated by people's ignorance, which often expresses in arrogant statements (like that therapist) and also in hurtful statements and actions, even from those who are supposed to care about us. Most of us here have felt this at one time or another. Maybe even all of us.

I commend you for speaking to the office about this. I don't know what you mean about "getting set up with her and others". But if you mean meeting with them or with the managers in order to educate them in fibro so that they won't say such things to other patients, that would be wonderful. It would make you feel better for having done something about it, and it would provide the information these people seem to be sadly lacking.

Of course, you may not feel like doing that for any of a hundred reasons, and there's no obligation on you to educate people who should be professionals. But I do think making a complaint about it would be in order. I always hate to complain about anyone's work or get anyone in trouble. But sometimes it is important to speak up, and this might be one of those times.

Take care of yourself, and do your best to let this incident flow through you and not hang around hurting you. Not easy to do, I know....but worth it for your own health.

No matter what you choose to do, you have our support and understanding!
 
MsRant, Welcome to the site. I too am new. I feel your pain and frustration with medical people not understanding Fibromyalgia.

I had a similar experience yesterday. I am a breast cancer patient. I had 3 surgeries and two weeks of radiation. During the radiation I got extreme Fibromyalgia and refused the last week of radiation. So now the next cancer protocol is Arimidex (meds). So yesterday I got a call from oncologist. She asked 'How are you doing?' Me 'Not good. I have severe Fibromyalgia.' Her 'Oh well let's check back in three months and see if you are feeling better. Then we can discuss your taking Arimidex. There is a 33% chance that you will experience joint pain...but think of the 67% that you won't!'
 
It helps me to look at these people with compassion and tolerance (sometimes after the anger has flown, sometimes it stops it coming up... :cool:
Fibromyalgia is very complicated and as a dermatologist said last week a trial & tribulation for docs and patients alike. No-one understands it and it scintillates because there may be different sub-types, no one is the same, and that is exactly how modern medicine doesn't work.
Docs & therapists read and hear a few things which may have been said years back and are not yet used to realizing that it's this hard. They also sometimes try to think black & white to feel competent. I try not to judge them the first time they say something "stupid", but to wait if they are prepared to listen. One of my docs said something which I didn't feel right the first time, but now he's become one of my most trustworthy ones, supports, listens, thinks, modifies. Others (esp. orthopedists) I gave a too long chance...
 
I understand your feeling. I am much older than you and I have diagnosed with fibro last march. for a while I was on different painkillers and when they not worked anymore my specialist prescribed for me morphine patch (Bupredermal 15 mcrg/hour)what I had to change every 7 days. My pain is better then was before but not helping with my CFS. I am lucky because my doctors very nice, but some of the doctors not want to hear us, the want to brush our problem under the carpet. Maybe because here (Australia) the fibro now much more known by people and the doctors too, here we got more help. But the most terrible things when people or doctors or others said "this is only in your head" or "pull yourself together etc... " that kind of comments make the people like us more miserable upset and depressed. I hope you find a good therapist who you can trust. Not a very good thing if you not goin all the time to your permanent specialist. I am always going to the same person , even if he is going on holiday or absent, I am waiting until he is available. If you can try to find ONE good therapist and don't change even he is not there, wait until he come back. I think this is very important and give you some kind of stability.
 
Back again, needing to scream, looking for help.

To update first, I was brave, I stood up for myself. I want to say that because I think we all get stuck under the "I don't want to complain" "I don't want to burden others", etc umbrella. We all know that no one likes to hear over and over about the pain, or about issues, and having this been called the "complainers disease" starts us out in awkwardness, imo. Plus, right now, I am not into having to educate my healthcare workers, it's depressing, it's upsetting, and if they cannot be bothered to educate themselves, Im ok with finding one who will, I just dont have the energy. So, I did it, I said this was not acceptable, had a chat with the PT that I had been working with, and was doing well with. Found out he is the managing PT at this location, and is super understanding (he even tries to learn my "words for pain"). So, no more icky lady that has no clue, he is stuck with me, and I am getting movement back in my arm again, WEWT!

BUT...lol ya, we all know that right?

1. I had this crazy weird pain in my hip, deep like a lot of the fibro stuff I feel, but also topical, like it was so painful I couldn't handle wearing pants, the cloth touching my skin was making me want to cry it was so bad. welcome to bursitis. evil. evil pain. the only reason I didnt think it was the fibro is that my fibro stuff moves, its not happy sitting in one place for too long, even if it likes certain places (my arms, back) it still moves around a bunch, this pain didnt. So, for me, that means have it checked. I did, and first it was...this is a bone bruise, you are laying down too much...this is going to turn into a post about docs, but not just yet. So, we wait, a bone bruise would go away, nope. Back to the doc, different doc, this office is playing revolving door doc,...uhh how long are we going to say bone bruise? xrays, nothing broke ofc, so now its bursitis, ok, fine, more random pain. yay -.- someone shoot me please. I tried creams, rollons, patches, nothing was enough, and the OTC patches..I am slightly allergic to something in the adhesive, so nope. Finally they gave me a script for Lidocaine patches, but insurance wont pay for them. (I am on disability, have insurance) Great, ok, so hey, I need this sent in so I can get these patches, but..the docs office cannot be bothered to respond, so the patches were denied. My daughter got me some that she paid for herself, to see if they would work, and they did, somewhat, and I did not have an allregic reaction to them, but they are about $3 each. Not something I can afford on the regular, nor did they help enough to warrant the price. By now, I have become accustomed enough to the pain, I can at least wear pants again and am not screaming out loud every time it decides to throw out a shooting/stabbing pain burst (which it does in addition to the constant area specific pain). really, shoot me!

2. I felt weird. Like my insides were shaking. I am used to the shakes because of the epilepsy, I've had tremors in my hands since I was a kid. The fibro makes it a little worse, occasionally adding in jerks and twitches from muscle spasms. But I've never had any inside really. At the doc visit my BP was a little high, and even though I had a slight cough, my lungs were clear. hmmm During another PT session, I was mentioning this to G, and he took my vitals, again, the BP was a little higher. By night, it was worse, and daughter said MOM...giving me that, dont make me have to lecture you look, and I said ok, lets go to the hospital. My BP was higher still, like 196/107, which, the nurses were like...well, it's high, but nothing that WE should be seeing your for. I do understand that, I mean they see people in a bad way, having heart attacks, and while high, mine wasn't there yet. I said as much, while saying that for ME, this was not normal. Even though I carry extra weight, that I am working on, and I have seen slightly higher than norm before, being THIS high is not normal. The doc decided to do a scan, just to be sure, and found some fluid on my lungs that should not be there, just the beginning of heart failure, its ok, we're gonna give you a diuretic and some meds and call it good. Its been a couple weeks. Yep, the fluid is gone, no more inner shakes, (here it comes) BUT the dose isn't right, and I cannot stand up for more than 3-5 minutes at a time because now I am dealing with low BP (95/60). On top of this, I have very bad issues with meds. I almost always deal with those nasty side effects they list, and almost everything trashes my tummy. So, now, I am dizzy and cannot stand up for long (sitting is slightly better, but not for much longer than standing), I cannot eat more than a few bites at a time (a full meal for me now fits on a dinner roll/bread plate), what I do eat, sometimes it will stay down, sometimes not, and even when it does, the first bite or so will come back up before I CAN actually keep anything down (yep, puking at almost every meal is soooo appetizing), and again I am fighting the how freaking pathetic am I feels. This is not a life. It's just not. dang it, I didnt want to cry while I wrote this..one sec....


ok, so now the doc part. During all this, the doc appts, I am vocal! I do say this is a problem, etc, and EVERY FREAKING VISIT...the fibro is doing this....on top of the fibro....they wont even SAY IT. I bring it up, again, and again, they will not even acknowledge the fibro. EVERYTHING they or I do affects it, like it or not, I FEEL IT!!!! and yet, all they have is blinders it's the diabetes, it's the meds, we have to adjust, NEVER, not once do they ask about the fibro, mention, NO acknowledgment AT ALL. and it's not just one doc, EVERY SINGLE ONE AT THIS OFFICE, that I have seen, at least 5 different docs. blinders! I am trying so hard. I want to be able to do things, I want to be healthy, I take the insulin, the pills, I put up with their arrogance, the vomiting, the desperation, the depression, and I keep positive, I keep trying, I keep working and asking, it's so hard, and then feel like they are saying its not real, no acknowledgment, no validation, no mention. (For the record, I have had the fibro DX longer than the diabetes) full out cry pause, sorry...brb...

Anyway. I am trying to get into a different office, one that doesn't play revolving docs, one that hopefully will pay more attention to all of me, not just one part, but I cannot get in until march. Freaking March. *deep breath* But I have hope. They come with big recommendations for not being a "corporate" office, one more focused on complete health. For now, I am struggling, really bad, and hoping the docs I have don't kill me before then. And Im hungry.

Much love to all of you, keep fighting!! Happy friday :D
 
Ms Rant I am so sorry you have to go through such bs, I kind of had the same problem with my first cancer diagnosis, but I knew there was something wrong so I just kept going back. I seen every specialist they could send me to , in their defense my numbers weren't that off for them to even consider cancer, we just kept trying and testing and I just kept getting that my numbers were slightly off but nothing to be concerned about, until one day (this was god taking over for me) I had a little lump in my groin so my primary Dr. (who I love she is great, luck to find her) sent me to see a surgeon because we thought it was a hernia. We scheduled my surgery the next day to fix the hernia and they has to take a lymph node and of course send it to pathology, at the time I was totally unaware of what was truly going on the surgeon said he new it was cancer the minuet he seen it and took it out, but was unable to tell me without first getting it tested at the lab, meanwhile back at the ranch i have my follow up post op with my doc that Friday in the same week, she hesitated and then told me I had Hodgkin's Lymphoma and the tears instantly started and I yelled I don't want to die because you hear the big C word and that's what you automatically think. Well by the time everything was said and done I have my oncology appointment and my awesome oncologist tells me that I have two growths the size of grapefruits on my lower left abdomen area where my uterus used to be, that kind of freaked me out because there was nothing there to cause this I thought. Well to make a long story short I had a very treatable cancer that had a very high success rate of remission. I guess what I'm trying to say is that I know how frustrating it can be but I came out of it with a new philosophy that is no one knows you body better than you listen to it and if that Dr. isn't giving you answers and ignoring what you are telling them definitely find a new one and keep searching until you find the perfect fit someone that will sit down with you and talk about what is going on with you and coming up with a solution together you deserve that . When you are in with the Dr. that is your time and you shouldn't be on a time schedule they should take however long they need to , to resolve your problems and your fears.

My thing is my family they look at me like I'm making it up to get out of doing things ( when I'm the one who is doing almost everything ) or its all in my head. I told them to look up fibromyalgia and research it see what I go through on a daily basis, my husband did and he said he understands a little more than he did before but I still get the looks. Don't get me wrong he does try to help sometimes but doesn't fully understand.

Well I hope I helped a little have a goodnight.
 
Status
Not open for further replies.
Back
Top