pain management support group

Hey there transcriber52:
Yes my posts will be more frequent here, because I set this site up a few months ago in order to give support and get support. It's been a slow start, but it is my goal to start a community that will not only center around our needs for decent medical care, but support that is readily available to us all who share the same 'ol thing: living day to day with the P-A-I-N. I also hope to see family members who live with pain patients ask questions about how to offer their "help", what to say, how much to do, and resources for them to receive support as well. I have seen many posts on the pain management board pertaining to family members of chronic pain patients who just don't know what to do for their loved ones.

It's not fair for us, for one, that we have been handed our "conditions" and especially not fair that we have to live day to day with the physical pain, and sometimes emotionally abusive/misunderstanding partners. I hope that many can share their resources, i.e. literature, articles, studies, that pertain to those in our shoes so we can all get a better understanding of how much information to share with our families (including which medications we take, which doctors we chose to see, which pain management approaches we chose to follow,etc). I'm just a sufferer and want to give more than receive, but the reception, I know will be a Godsend.

I guess I should have posted that as a thread, but it just felt right to say it to you in response to your post; so hopefully a few others will read and jump in this discussion.

I think your statement of feeling "devalued" as a family support/caregiver rings true for so many. I have a 20 month old and as he grows, yes it if physically taxing, but the things he has observed mommy go through aren't fair. He sees me cook hot packs, lie down a lot, cry sometimes, and he is picking up and mimicking our behaviors already. I have already stopped opening all pill bottles within his sight, because I don't want that as a lasting impression or even a behavior that he may try and mimick...
I hope you understand, but he just made a crash landing at my feet at the computer table. He needs some cuddles now. I will have to get back to you later. Thanks for posting, transcriber, and hope to hear back from you, B

BrenBren30810, You said your 20 month old is already mimicking your behaviors then what a better behavior to mimick than to cuddle when it's needed. That's what we want them to know. You are great. I think you are so right about letting them see the pill bottles and behaviors that make lasting impressions. We can teach anyone by our example and if we practice dealing with our pain in an ok way that we can deal with it the best we can, they may learn that also. Pain happens to everyone. It's just not everyone has to live this way, in pain 24/7. We are a community to ourselves here sharing with one another our issues and helpful responses.. It may help it may not but it seems to be ment with heart. I have been telling my friends about this site hoping more people can find what helps them here. I have learnt from the death of my SIDS baby that I could heal better when I reach out to touch and help someone else than to stay inside myself. These pain issues are the same for me. Helps us to not just focuss on ourselves but to be there because we may still be able to give a hand to help someone else up. You have a beautiful day with your little boy. These times are so special. (Thanks for writting back)

My goodness Transcriber, I don't know why I haven't seen this response. I'm so sorry for your loss!!! Makes me want to cry.
I can't imagine the pain and suffering that created in your life and you sound like such a wonderful soul. I'm so sorry that happened to you and your family. I don't know what to say about things like this; I actually came to your original post here to read your words of encouragment because I've had a rough couple of days. Boy don't I feel like I should have not a single complaint.

Please write back soon, and again, I apologize for not seeing your reply. I sincerely hope that you didn't figure something that you said triggered my absent-mindedness (medication problems are to blame here) and inability to write you back. I hope you are managing your pain levels the best you can and you are enjoying your weekend.

I'd love to hear back from you...the site has been slow, so you're mentioning of "grabbing" a few friends to come over will be a blessing. I think once we have a few more willing to share there stories, then we can truly create a "Support Group". Thanks for your efforts. Be blessed, Bren Bren

Thanks to both of you for posting. There is always someone out there who has it worse than me. We feel so isolated sometimes, then we read some of the other posts and we realize how blessed we really are.

I love having a bunch of great people such a you to go to, when you are so needed for your knowledge and understaning.

Thanks again BrenBren for all the help and hope you have already given me. Prayfully, I will hear from the therapist and begin that "special" therapy soon. I also trust it will begin to be some help to me.

Hey Charl,

I wanted to offer some suggestions that may help you get more confortable, physically, and maybe to bring up with your new physical therapist. I am posting all this here in order to offer any new ideas to others out there, too.

I didn't get to mention all of my pain conditions when we spoke, so these things I will mention help me with my extrememly difficult - to - diagnose - condition(s): SI (sacroiliac joint dysfunction), pudendal neuralgia, adductor tendonitis, ischial bursitis, hip bursitis, SI joint arthritis, hamstring tendonitis, sciatic nerve trauma, etc (you get the picture).

These are some of the things I do when the pain gets out of control, but usually I have to do these things at home because it's difficult out in public for obvious reasons...

2 things to mention to your new PT if she thinks they will help you:

1. An SI belt. This can help "hug" your hips and offer support for your SI joints while walking around, doing chores or whatever. I have 2 types. One is the following and is available online:
"The Biocybernetic Sacroiliac Joint Belt"

You can check it out here:http://www.reliefmart.com/sacroiliac.htm

It has a pic of it, and describes how it fits. Yes, I spent almost $100 on it, but it is a very complex design and fits very well. It did help me when I was able to take walks. But you don't have to go that route. You can ask your PT for one and most likely she'll find one that is very simple: it is a velcro belt (about 2-3x the width of a mans belt) that just fits around your waist and adjusts very easily. I like to wear that one low around my hips because it keeps my joints from moving too far out of place. It is a little difficult to wear under clothing, but the first one I mentioned is an easier fit if you want to conceal it. This is an important tool for me (the belt) because I can put an ice pack over my sacrum, then wrap the belt around it and be mobile while icing my sacral area - I can also do that with a hot pack and that feels great.

2. A TENS unit: http://tensunits.com/
here is a little blurb to explain the device:
"TENS stands for (Transcutaneous Electrical Nerve Stimulation). which are predominately used for nerve related pain conditions (acute and chronic conditions). It works by sending stimulating pulses across the surface of the skin and along the nerve strands. The stimulating pulses help prevent pain signals from reaching the brain. They also help stimulate your body to produce higher levels of its own natural painkillers, called "Endorphins".

I like the TENS unit but my PT picked it out and ordered it for me, so I ended up paying an arm and a leg for it. They are pretty cheap these days online; just find some reputable co.'s and do price comparisons.

I also like: Tempurpedic cushion, or a simple "doughnut cushion" helps for pudendal neuralgia but since your's is more in the back part of your pelvis, I'm not sure if that will help you like me.
Do you get relief while sitting on a toilet seat?

When you lie down, try lying on your stomach with pillows under your hips and relax with a hot pack placed on the muscles surrounding the area of pain. It is important to "tell" those muscles to calm down and "let go" of the nerve. One of my symptoms is like the muscle is biting down on my sciatic and pudendal nerves.

I love "Tiger Balm". They have a product that comes in a lotion type squirt bottle called "Arthritis Rub". It is stronger than "Icy Hot", offers better relief, but the principal is the same.

Get in a tub of hot water. Decompression is important. Like some back pain sufferers like to use traction, it's great for our pelvis to have absolutely NO pressure at any given angle.

Sometimes when I drive, I will sit on an ice pack; that helps a lot.

I know this is a tough condition to live with, but you make the best of it while you heal and find ways to work around the injury. I miss going to the movies, eating out, and just being out with friends. Hang in there and post your progress!

Hey again Charl, the most obvious remedy I forgot to post here was the sitting at your computer (because I have written you so much and you must be exhausted from reading already)...go to Target or Wally World or a fitness superstore and invest in an "exercise ball". They are very comfy to sit on and distribute the pressure very well while sitting. I bought an xtra large so I could sit on it high enough to reach my desktop computer. It's not a cure but it helps so much and plus your PT will probably give you exercises on one sooner or later. If you don't know what I'm speaking of, please let me know and I'll elaborate further. Take care, B

Hi BrenBren,
I have used the TENS unit. That was a long time ago. I have also used a sacral velcro 3" belt, I ordered it some time ago form Serola.net (3must be the size) I really couldn't tell the difference when I used it or didn't.I also have the ball. I am anxious to see what the therapist will tell me to use or which exercises to use. I have an appointment tomorrow. I can hardly wait to see what they can do for me.I am happy I am getting in so soon.

It was was interesting about Tiger Balm which is an Arthritis rub. I assume that it is across counter med. I'll look for it.

I'll get the excercise ball out and give that another try. Thanks for the help you have already given me.

hey charl - when hubby and i were in martial arts we used tiger balm all the time for all our aches and pains - here's some things to consider -

1) It is VERY STRONG SMELLING so don't put it on and go out in public - i.e. restaurants, grocery stores etc

2) If you put it on and then decide that u need to take a shower - DON"T - it burns real bad - so wait a few hours - like maybe 4

3) if you put this on before bedtime, Bob may want u to sleep in another room! LOL it is very strong smelling -

there are other types out there that don't have odors to them - not sure if u remember me telling u this but i was and still do use aspercream - it's odorless and does not have enough aspirin in it to penetrate in to the stomach area -

remember one thing - these are all over the counter and they really only hit just below the skin area - they really don't penetrate deep down enough to get to the areas that you need -

i will call u later this week - not doing so well - pain levels are sky high and i must be coming down with what Tim had as all i'm doing is sleeping - i sleep for about 2 hours up for an hour then sleep again - been doing this for the last 3 days -

talk to you later - love ya sis -