I need a hug...or 10

crazymama30

Active Member
Gentle Hugs. Have had similiar experiences with husband. He has lots of pain but no one really knows why. Luckily he tolerates some of the medications better than it sounds like you do. One thing that really helps him is Voltaren Gel. It is a prescription topical gel that you rub on where you hurt. It is slimey and gross, but does help. What also helps him are the therma care wraps. They heat the area you apply them to. Some days nothing helps. I hope someone can help you get the answers you need.
 
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flutterbee

Guest
Thanks, ThreeShadows, but I don't think I'm doing any more research. I've logged hundreds of hours of research and it has gotten me nowhere. And my pain level has been at an 8 or above for the last 3 days straight. Usually, I at least get a break down to 5 or 6.

You know, my GP sent me to this pain mgmt doctor because she said she really likes him; that he doesn't just treat the pain, he looks for the cause. Totally not my experience. 2 rheumatologists (one from OSU and one from Cleveland Clinic) plus my GP recommended pain mgmt doctor.
 

gcvmom

Here we go again!
Where's Gregory House when you need him? (Did you watch tonight? It was about a guy with chronic pain who wanted to off himself. Turns out it was a weird form of epilepsy causing the pain).

Okay, bad joke. I'm sorry. I wish the same thing Toto wished.

Here's 10 more hugs, or so.....

hug
Hug
hUg
huG
HUg
HuG
hUG
HUG
h u g
H U G
 

goldenguru

Active Member
((((HUGS))))

I'm so sorry Heather. I can't imagine how frustrating this must be for you. Give yourself a few days to re-group and then keep screaming until someone (besides us) hears you!!
 

ThreeShadows

Quid me anxia?
Heather, I can't figure out how to PM you. I am infuriated by the treatment from your docs. Would you like me to help you do some research? Nobody should live with this unrelenting pain. We only have this one life on this gorgeous planet. I am old enough to be your mother and feel protective of you. I don't mean to be pushy or step on your toes and would have prefered to put this in a PM.
 

rejectedmom

New Member
Heather, My daughter kept pushing me to get massage therapy for my pain problem but like you my entire body is a "trigger point" I just could not understand how I was to do it when everything hurt so much. I decided to try out Reiki and it helped ease the pain enough to go for the massage work.
I continued with the Reike because I found it helped me alot with my stress (a major factor with fibromyalsia). I went into Reiki training a year ago and I am now a master practitioner. I treat myself daily and others when they ask. I also downloaded the e-book Treat yourself toPain Free Living by Julie Donnelly which teaches the Julstro Techniques to release the muscles. I use this method with great results in between massages.-RM
 
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janebrain

New Member
I'm so sorry, Heather. I don't even know how you manage with these pain problems and a difficult child on top of it all. It's no wonder at all that you feel discouraged and I am feeling quite angry with the pain doctor right now!

My late husband went through some of this too--he was having joint pain and no one could find a cause. He was put on antidepressants since it appeared to be "in his mind." A few years later he was diagnosed with leukemia. He actually felt a sense of relief that someone had figured out what was wrong finally even though it was a pretty grim diagnosis. He felt vindicated that it wasn't all in his head, it just took time for it to show up in bloodwork. Not that I am saying you have leukemia! Just that I have a small glimmer of what you are going through.

Hugs,
Jane
 
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flutterbee

Guest
Thank you all for the support and hugs. I'm still reeling.

Gcvmom - even my GP has said I need a Dr. House. Wish I knew how to find one around here.

Threeshadows - I sent you a pm.

RM - Could you give me some info on Reike. I've heard of it, but am not familiar with it.

Jane - I understand how your late husband felt. When I had the heart attack at 33, I felt validated. I wasn't scared until later and really not that much. I think the validation felt better than opening my arteries did.

You know what I find just really amazing? I've had 3 doctors (my GP, rheumy at OSU and the pain doctor) tell me that they are amazed that I can put my hand right on my sacroiliac joint and hip bursa without feeling around. Well, they hurt everyday, so they're not hard to find. Yet, it's never addressed other than my GP giving me steroid injections - of which only one worked and only for 2 months.

Actually, there are a lot of things throughout this ordeal that just amaze me. I think I've resigned myself to the fact that I am going to have to live with this until something significant happens that can't be missed. That's what happened with the heart. I imagine that's what will happen with this, too. I'm just too weary to fight anymore. I am going to research treatment for fibro as that is one diagnosis I do seem to have. But, even the Cleveland Clinic doctor says that isn't all I have, though she doesn't know what else I do have. She said that at the appointment. I still haven't heard back from her.
 
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flutterbee

Guest
She said if I didn't hear from her by (last) Friday, to call her. I have. Twice.
 

4sumrzn

New Member
Ohhh....I'm so sorry. I wish the right doctor would hurry up & come along for you....give you answers & make you all better. It just has to happen for you.....just does. {{{hugs}}}
 

ThreeShadows

Quid me anxia?
The Central Pain Patient's Bill of Rights

We all face frustrations as we interact with our family and friends, and with the medical professionals we count upon to help us. It's impossible for them to understand or to fully appreciate the extent of the impact of Central Pain. This page is a byproduct of those daily frustrations.

1. We have the right to tell others that our nervous systems are dysfunctional, and that otherwise normal sensations are communicated to our brain as torturous pain.

2. We have the right to ask for assistance with feeding and housing ourselves, just as with anyone else who suffers a debilitating disability.

3. We have the right to inform our doctors that our pain is different from that of other patients, and to help educate them by providing literature specific to Central Pain so that they may better offer us treatment.

4. When a treatment is not working, we have the right to tell our doctors that it is not working without losing the good will of the medical profession.

5. We have the right to demand that the needed research is performed to help stop our pain.

6. We have the right to call for every medical student to receive at least basic training from specialists in the treatment of pain.

7. We have the right to wear less than the normal amount of clothing and still circulate in society, so long as we stay within bounds of decency.

8. We have the right to limit of movements, and to avoid movement that is painful.

9. We have the right to request help and understanding from others without being accused of weakness.

10. We have the right to help others understand that we are severely disabled, even though our bodies appear normal to their eyes, and thus we have the right to not always fulfill the expectations of others as to how we should act.
 

ThreeShadows

Quid me anxia?
Chronic Pain

By Paula Baier


Let me introduce myself to you,
I am pain.
Not just pain, but Chronic Pain.
Sometimes I am a hot searing pain,
other times I am a sharp shooting pain,
cutting through you like a knife.
And yet at other times I am like a root canal or toothache, that never goes away.
If left uncontrolled, I will rob you of your humor,
I will rob you of your friends and rob you of your dignity.
I will rob you of your job and make your family miserable.
I will take away from you everything that is dear to you
including your very soul.
You can not see me,
As I am invisible to the human eye.
Therefore one should not judge someone
who knows me on a constant daily basis,
for I do not ever go away.
I do not have any friends,
for if left alone,
I destroy them.
If you think you are safe from me,
Please think more than once.
For I can become a part of you,
as quickly as a snow flake falling from the sky;
as easily as a leaf falling from a tree
or raindrops falling from the sky.
No one wants me as a friend;
Because I Am The Enemy!
Many doctors fear me
for they don't or won't treat me!
I am treatable,
but on many times I am not seen
I hide and I lurk in somebody’s body,
and many deny I am a part of them;
in fear of being called insane.
Why are doctors afraid of me,
Are they afraid of me because of who I am, and what I can do?
or who my insurance company is?
or is it the Federal Government
in which they fear?
 
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