getting things across to people

I know what you mean, lady, with seeing so many different drs, I went through that until I at last found my rheumy.

For the first 4 years I had fibro I wasn't able to admit to the doctors how much pain I was in. I guess I was doing what the British say, keep a stiff upper lip. I was doing that not only for myself but for my kids too. It feels better now to admit how much pain I'm in if someone close to me really wants to know.

Lady, I had a functional capacity test years ago done through a physical therapy facility to test how much I could do. Maybe this is something you would like done?

I don't think that I rate my pain right either, though I am at a 3 or 4 most of the time, it is nagging. But I don't think I have ever had an 8, 9 or 10. To me 10 is the most excruciating pain imaginable. I don't think I have had that. How would a person even know what that is? I try to picture something terrible that would cause that type of pain, and I guess I really don't want to. I think as somebody above mentioned, it is all different to us. Or different to all of us. I don't know. Good topic. Makes a person think...

Hugs...

I forgot the issue of this thread...  I don't have any reason to explain my pain to anybody but my doctors or my husband.  I guess I have gotten tired of trying to explain it to other people.  They can't perceive it anyway, so I don't bother.  It is sad though that more people aren't educated on fibromyalgia.  I think a lot of them think it is all in our heads anyway.  Because "we don't look sick"...  Yea, we have heard that one over and over haven't we?  Any how...  I hope that you all have a good night...

I had no idea how to rate my pain until I saw a pain scale with facial expressions on it. I actually live everyday at a 5 (slight grimace). I don't take pain meds until it rises. A level 10 is tears rolling down my face and hollering. I had that the other day when my neck and shoulder spasmed up for the day.
I think I need to take the pain scale with faces and point to it for different times of the day for the rheumy.

Today my pain scale is a 7 in my hands. Oooooo.

While it bothers me usually, it has really been bothering me more lately. I am trying for disability with fibro a part of it. I have a manual wheelchair and have for years though i do not use it much. My arms/shoulders do not let me wheel myself around, and my husband now has arm and back issues that make it hard on him to push me. So after the strokes we decided to talk to insurance and drs about a motorized wheelchair or scooter. A scooter is not an option because i can not hold my arms up and out long enough without pain to use the handlebars. So not only am i having to tell social security every thing i do or can not do, i also have to the wheelchair people (insurance and the rehab equipment co). Not to mention trying to explain to the physical rehab why even though the ortho says i need PT i am afraid to try it due to pain. Some days just getting up is hard, and they want to put me through therapy on my back? Trying to strengthen the core and flexibility. The dr said the course of therapy is intense due to machines used. They say they will go slow and stop if too much. We mostly talked the first visit so i explained all the health issues i was concerned about.

Then the next day i went and had xrays done for the rhuemy because she is thinking RA or lupus with the fibro. There were many xrays and by the time they finished and i got home, i was miserable. Pain! TThey  said i will have prob have 6 wks of therapy. Not looking forward to it, but willing to try anything if it will help.

sorry long and rambling.

I just visited this section of healingwell.com for the first time. I have spent most of my time reading about my wife's health which came back as "positive" but her blood work came back as "undetected" so all looks good there, follow up this week. The biggest issue besides pain an isolation is it seems other people just don't "get it"! Unfortunately this is with family and strangers. I can handle the strangers but really hurts when family doesn't understand. I'll update my profile here shortly. I see others share some of the same illnesses, can't help to wonder about potential links! I see I'll need to learn some of the terminology!

Myself 09 said...
I have been thinking about this the past few days, and decided to, finally, comment.

I think I often underplay how I feel. I find it difficult to sometimes notice new aches and pains, when I always feel aches and pains. I think this can be difficult for caregivers and medical staffs, because I may not be as verbal or clear about what I am feeling, because it is normal. When I always hurt-it's hard to get worked up about a new pain. Or know whether it is a serious one, or not. Or out of the ordinary, or normal. I simply adapt to it, and figure out how to deal with it, which may make it harder for my doctors.

It can also result, IMO, in being under-prescribed or doubted. The whole "But, you don't seem sick" phenomena. Perhaps not, but I am. I need help and I need to be taken seriously, but how can I express myself when I have difficulty identifying and explaining what's going on.

It's frustrating.

Very well said.

 

But what about the people or groups you need to ask help from? They do not care, in fact a lot look for a reason to turn you down. For example, social security and trying to get the wheelchair. THere is a balance that you maintain, getting them to understand that you need the help (meeting thier criteria) and not sounding like you are just "out for what you can get".

My health has caused an wedge between me and my dd. She says i just need to make myself well. She says fibro is not real. She turned 26 yesterday and we have always had a crazy relationship. i have been unhealthy since she was born, so she does not know me any other way.

Lady I am sorry for the wounds that others inflict on you due to either their lack of comprehension or denial. I have finally found one statement that works for me when I am feeling bad and it is obvious and someone asks, "How do you feel today?" "Like crap." That one usually makes them take a step back and realize that one; I normally do not speak this way and two, what a STUPID question!

I sat my Rheum down on our second visit and asked him to hold my hands and close his eyes because I didn't want him to see an overweight, middle aged woman, but to only listen to my words. I was surprised he indulged my request.

“You ask me about pain and how bad it is. Let me turn it around and tell you about a good day. On a good day when I smell a freshly mowed lawn, I want to find my mitt and bat, which I haven't used in 27 years and go play ball at the park. But I can't. I know that after a few throws, and I now throw like a girl and I am one, I will be giving an amazing rendition of Steve Martin dancing. Good days for me are the worst, because they remind me of what I have lost. Give me a day that's a 5 and I am happy; the pain is tolerable."

“Now I am blessed by my physicians, you being one of them. Living here in Los Angeles, I have wonderful access to amazing doctors who are at the top of their professions. My problem is they each look at me though the periscope of their specialty and do not look at me as a whole person. Think of a mosaic, each of them look at their tile; they polish it, take great care of it, but none of them step back and look at the big picture, me. I need you to help me learn how to teach them to see all of me, the past, the present and the future; not just the 20 minutes they spend with me in the office." He opened his eyes and leaned over and hugged me.

I have found that writing letters to those people who I need to understand me, family and physicians, works wonders. They can read it and then go back to it again and reread it until either they understand or then formulate questions to ask me to open a dialogue. Writing helps me to clearly state what it is I wish to say without stumbling over my words in a Fibro-fog which distracts from the importance of what I wish to say.

Good luck and I wish you a better day.

Uhhhhhggggg So sorry reading this thread and issues folks struggle with relative to accurately tracking pain levels and coordinating the input from a care team made up of many specialists. There are better ways. That is all I can say as the rules prohibit otherwise and despite repeated efforts to try and contact anyone "in charge" for this site I cannot get any response at all.

To me - a pain level of 10 would be what it might feel like to be doused with gasoline and lit on fire while being whipped with barbed wire. My wife with fibro fights through levels 3 - 8 and the days when she flares to an 8 are pretty horrid but thankfully rare. We are getting better at anticipating and heading severe flares off.

The comments about different specialists being focused on treatment options relative to their specialty - exactly on target, but also to be expected.


Terry

Do you ever wonder if your baseline has changed. I'm so used to a certain level of daily constant pain that I almost feel like that should be my "1" but if I use that with a regular person then they wouldn't think my pain levels were that high.

My "10" comparison is giving birth to my 9 1/2 pound son naturally. I got a leg cramp during hour two of pushing...that is my "10!"

Joy

howdy folks, Im so sorry for all the pain here. Explaining fibro is very frustrating. I dont even bother doing it much anymore. If I looked as bad as I feel, they would put a huge grocery sack over my head and entire body. My whole body has turned into a big sack of hard knots all over. I moan when trying to get up,,,forget the moan, as its more like a little holler. I went in yesterday for more injections in L2 3 and 4. I was all set to go when doctor came into my little cubicle and said I had a fever, 98.9 which is high for me as normally low like 98.00. This is the 3rd time in as many months that I have a low fever. He refused to do the injections. We both agreed that something is going on somewhere and it just wasnt worth it to lower my resistance with steriods. I love him. He is my neuro and pain management Doc. Im heading to bed yall. Happy Thanksgiving everyone, and big ole Texas hugs to everyone........Cathy

I don't have Fibro (my wife does) but I do know pain. I have experienced what I would call a pain level of 10 once in my life.

In 1990 I had a motorcycle accident that resulted in a compound fracture of the right femur, mid thigh. I knew something was wrong as I lay there when I noticed the bottom of my foot was laying on my chest facing me. The jagged end of the bone was stabbed into my thigh muscles. That hurt pretty dang bad... call it a level 8. Then the muscles began to spasm uncontrollably which assisted the bone in working its way cutting through the rest of the muscle tissue and then the skin so it poked out. That was a level 9. When the EMT's arrived, they rigged a scaffolding thingy and put a velcro band around my ankle with a line attached to a little winch and began to slowly crank the leg back straight. That was 10. Uncontrolled screaming at the top of lungs - begging for immediate death to make it stop - 3 large men required to hold me down - 10.

From all my experience observing fibro in my wife and interacting with many others who suffer from fibro, (my full time job is designing systems to facilitate fibro self-management skills) its not the acute extreme levels of pain that are the bear. Its the never ending cycle and long drawn out gnawing protracted nature of the pain. A pain that may be a level 4 on a wong/baker pain scale becomes something else when it has been present for many days... or weeks... or months. It literally brings changes to the neurotransmitter related brain chemicals such as Substance-P and Cortisol that result in the brains interpretation of the pain being all over the map. It leads to negative feedback loops whereby symptoms can interact negatively. The patients perception of pain (their reality) is altered in such a way that it is fundamentally different from non-afflicted individuals.

The well meaning friends and family members who read about people gaining relief through various treatment options like Yoga (or substitute any one of thousands of potential treatment options) - they may not think that Yoga is a "cure" (though some who have not really done much research will) but they may have read that Yoga DOES provide help for many fibro patients. Research studies focused on fibro support this. A "cure"? No. But potentially helpful? Yes. The same applies to research studies that demonstrate that fibro symptoms frequency and severity increase as body mass index increases and many other studies. There are MANY things that have been demonstrated as effective relative to treating fibro. But "effective" does not mean a cure, and while these things may be very helpful for some, for others they may offer no benefit at all - or even make symptoms worse. That applies for everything from Lyrica to pain meds to exercise to diet choices.

But put yourself in the shoes of that caring friend or relative for a moment (my shoes). In some cases, they may read about treatment options or success stories and in fact take that to mean that whatever treatment they have read about is some miracle "cure" and you have just not heard about it. That is understandably frustrating for you. But then again - if they have read that Yoga can be helpful and they do understand that it is not a miracle cure but an option that MIGHT bring meaningful benefits (which REAL fibro focused research studies have shown), they communicate this to you and then observe that you are not interested in trying yoga - how do you think they feel? Apply the same thing to tons of other non-cure but potentially helpful treatment options?

People who care about you want you to get better. They may not understand fibro, they may not really "get" what your going through and they may tend to make silly suggestions. But can they observe that you are fighting to get better?

If your going to limit your treatment efforts only to things that have been proven to in fact be a "cure-all" - then I would suggest your struggle is going to be much harder than it should be because there is no "cure-all". But the fact is many people DO recover or reduce and control symptoms to a degree where life is tremendously improved. This is the core of why building a strong "self-management" approach has been promoted by the NFA, NFMCPA and many other unbiased fibro experts and groups. A multi-dimensional treatment program that IS effective for you will likely be very different from a program that is effective for other fibro patients. Building your own custom tailored treatment program requires a pro-active process of researching, testing and validating different treatment options and combinations of options. Trial and error. But if you limit what you choose to test only to things that are recognized as a "cure" - your not going to test anything.


Terry