Frustrated, searching, angry

MsRant

New member
Joined
May 7, 2021
Messages
3
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*
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,341
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
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!
 

chillax316

Member
Joined
May 7, 2021
Messages
10
Reason
DX FIBRO
Diagnosis
04/2021
Country
US
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!'
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
473
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
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...
 

Edit

Member
Joined
Mar 3, 2021
Messages
14
Reason
DX FIBRO
Diagnosis
03/2020
Country
AU
State
SA
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.
 
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