Fibromyalgia Community

Hi Dr. P!
I don't know if this will be useful for your letter, but I will share my "helpful thing" anyway...

My PCP dxed me last November, but he never made it official, meaning he didn't write it down. (Shhhh!) If it became "official", my insurance wouldn't cover anything. He was answering my questions about Fibro, and then the medical student came into the room. He immediately changed the subject, saying that I had something else (for the record). Then he addressed my "concerns" about Fibro and said, "If you had it, you would manage it the same way you manage 'this problem:' with adequate sleep, gentle stretching, and plenty of water." He then proceeded to write two prescriptions "for emergencies" [they are both used for Fibro!>, winked at me and left. Now I can see him when I need refills, and they're covered. I love this guy.

While I have your ear (your eye?) I have a question. Can Fibro make your muscles swell up? I've been having trouble with the muscles swelling up right at the base of my skull, and the headache is continuous. There is no tenderness where the swelling is, but my neck gets really stiff. No fever, though, just the usual yucky, tired feeling. Any input would be appreciated---thank you!

Hi Dr. P,
When I was first diagnosed three years ago, my (former) Rheumy told me "The sooner you learn to live with this, the better". He was a rather rude and condescending man and I was extremely upset with his statement at the time. Of course now I can look back and say this was the best advice I received, unfortunately it wasn't delivered very well.

"Learning to live with it" involves acceptance, patience, pacing, prayer, coping techniques and so much more. It takes a great deal of self discipline every day to keep a positive outlook and truly live each day, not just exist.

My doctor made the point that sometimes (or a lot of the time) I will have pain no matter what medication I take and that's okay.

It sounds worse in writing than when she said it, but it is true. We are in pain, no matter what. I've learned that I'll be in pain if I exercise or don't exercise, if I stay on the couch or go out with friends.

It's not something that's easy to swallow but I think most of us have a similar epiphany. I still have plenty of days where I'm depressed and angry about FM but overall I have accepted this. I think it's good to tell new patients what you have said before, regarding the steps of grieving. It's kind of inevitable that we go through those steps. Eventually, we all must learn what our "new" life with FM entails.

The one thing I really wish doctors were better about explaining, is the trouble with weight gain many of us have. I think many still believe weight gain is only because of inactivity. Here, we all know that's untrue. But I think patients need to have more awareness of the possible weight gain side-effects of many medications. If I had known more about that, I wouldn't have started a couple of meds that have put me into a 3 year fight to lose the weight they made me gain.

You are correct in saying that one has to learn to live with fm...however, after 10 years, Im' still workin on it & not quite there!!!
God Bless You,
Denise

Hi Dr. P....love the picture by the way....you look so much younger and I have to know...have you lost weight too? If so...let us know your secret...

The most helpful thing that the doctor said...well...I am still waiting...no joke...I think I gave my doctor some tips...as I came home and started to learn all I could about this myself...

I do have a good doctor...and I have been going to him for a very longgg time.....as he is an older doctor...I guess this is why I stay on....he has known me a longgg time...probably longer than he cares to....lol...and we have had our words..
I see him...when I have to...

But I do not like change...and I do NOT like going to doctors...so I think this is probably why I am still with the doctor...

I truly do not think that doctors really understand FM...for the most part...unless of course...they have been there done that...like yourself...

I personally think that FMers...need a lot of encouragement...
because FM is a very difficult illness to accept....especially in the beginning...

I also think that you, as a doctor...should be sure and tell your patients to learn how to pace, pace and pace...that the gun ho attitude is not a good thing for us FMers....and you should also encourage them to check out our FM web site...

And last but not least...I have to ask you....do you tell your patients just how important the VItamin D is.....(I could not leave this out-if you know what I mean) and that you are going to check theirs to make sure this is ok....

OK...that's my story and I'm sticking to it...

Take care....I am sure you will get some good info here..


MiMi

Thank you, Dr. P., for understanding and being so helpful to us. I wasn't even going to respond to this post at first, because none of my doctors (I've been to 4 concerning fibro) have really given me any helpful advice! That's pretty pitiful.

But something Mimi said reminded me of one thing my very wonderful PCP said to me the last time I was there. At the end of my appointment he said "I'm proud of you." Now that was such a simple statement, and I didn't even ask him why he was proud of me. I actually think he meant he was proud of the way I'm handling this illness.

That meant so much to me, and really did a lot to boost my feelings. What made me think of it was when Mimi said that we need all the encouragement we can get. That is so true!

So thank you, Dr. P., for always encouraging us!
God bless you....Elizabeth

Elizabeth,...I agree with you, it would make for a positive experience if the doc would just say something empathetic like"i know life is difficult when you live with fibro, but hang in there you are doing a great job fighting this thing, or, "Im proud of how you are so proactive in your search for better treatment",, or how about, "i commend you for just being able to get out of bed every morning"!!! I have never been told anything positive from my docs & thank God I can tell myself positve aspirations each day & get them from my boyfriend & some family, some of th etime....Again, today I say thank God for this post!!!
Take Care,
Denise

Very well put, Denise!

I have to chime in on this too... about six months ago at the end of my appointment my PCP said "You look great and seem to be doing all the right things and managing everything very well. Please keep up the good work". That was the first time ANYONE had ever acknowledged what I do to keep myself together. It felt great to hear it and was a tremendous morale booster.
-Angela

My doc has a sign in each of the exam rooms, that reads:
You Have the Right to Live Without Pain

He (or his PA) is there when I need help or need a 'scrip renewed. I see each one every-other appointment, so they're both up-to-date. Each one spends way too long with me (30 minutes or more - what's up with that?). Each one enters the exam room knowing who I am, why I'm there, and remembers something obscure about the last time we spoke (How was that trip? Did your husband get that job?).

At the end of each visit each one repeats my orders to make sure I've got it, hands my a 'scrip (if I needed one) and says something nice, like "Keep up the good work" or "I'm glad you're doing well".

We are the masters and mistresses of our own future. I choose to participate as fully as I can!

Hi Dr. P,

My doctor is a huge believer that her patients should continue to work and not go on disability. Initally, I thought this was a really harsh philosophy but I recently realized her reasoning behind it.

If you have a reason to get out of bed every day, you WILL get out of bed every day. Some days will be very difficult (seemingly impossible) but it's worth it. Why? Because you still feel like you have a purpose. You don't look in the mirror and see someone who is useless because their illness has taken over their life.

Now please, I don't mean to offend anyone who has filed for or receives disability. Everyone's experience is different and I could never know what it's like to live in your body. This is just my theory about life - and I only know what has been true for me. But I have seen my sister who has Fibromyalgia and struggles with severe depression and anxiety - and when she is out of work, she rarely leaves her bed.

So, in short, I think the best piece of advice my doctor gave me was to not give up when I feel overwhelmed. I still have good days, even though I have periods of time with long flares. She reminds me to count my blessings - a supportive family, supportive friends and good health insurance.

Fibro does not have to define us and we can have a rich life if we learn to be flexible.

Jessie

ha!

my doctor told me, don't know if this is useful, but this is what they said,

you have to learn to deal with it, we don't give out anything more than basic pain meds.

so deal with it.

lose weight,


exercise.

Hi, the best thing my rheumatologist said to me after telling her about all my medical conditions including fibro was "This is really hard for you, isn't it?" It's like someone finally understood. I only wish that all doctors would show this type of compassion when dealing with their patients.

Linda

Good Morning,

Been Missing for a while due to a health issue with my Mom.

This post caught my eye as I was trying to catch up. Several years ago my naturopath told me I was in more pain than I realized and needed medical help to get sleep. Me being me did not listen right away....I wanted only the natural way.

I then went to a Dr. who mixed in quite a bit of natural with western med. She was good but not as much of believer in fibro but she tried.

When I had changed insurance due to expense I ended up with a Dr. who is all medicine who puts up with all my supplements. He gave me the best advice ever. He said until we develop genetic testing to know what med works for each of us it is trial and error.

Next he told me he could not cure it......but my cycle of fibro is pain...anxiety....insomia in any order as who knows which one really came first. All he can do is treat each symptom the best he can. For once I listened so now I use both approaches and I still have fibro...but feel more in control than I have been in the last 18 yrs.

Laura