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Old 05-12-2008, 03:21 PM   #1
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Good news & bad news, just feeling so down

Hey guys, Surgeon called today, good news is no tumors, lesions & all the things we fear were seen in my MRI. Bad news is he is pretty convinced there is alot of myofascial issues in that area & it is pretty bad.
He was really nice about explaining that this is one problem that there is no quick fix for & understands I am in alot of pain. Had this problem for along time & will take time to deal with, as he put it. I am so swollen & in so much pain. He said we will have to take it one step at a time. Well with a pain level of 7-8 all day that did not sound good. So I guess I will be looking at not being painfree anytime soon. Felt so very down. I will have to go through the osteo treatment & the surgeon feels they can help calm it down. I don't know alot about this, so will have to start looking into the myofascial. I can't get much relief or bend over today & am beginning to feel like a human ice cube. I honestly try to stay optimistic, & try to not let it get to me, but today I just could not keep it together. So much pain, & was looking forward to a nice vacation soon, no way will that happen if this pain level stays, which any activity & it is there. I have to tell my family & am going to encourage them to go with out me, beats feeling guilty.
I just don't understand how you can get use to being in pain everyday & I am tired of trying to stay strong, every now & then I just feel I can't do it. I hope tommorrow will be a better day. Sammy

 
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Old 05-12-2008, 05:02 PM   #2
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Re: Good news & bad news, just feeling so down

Hey Sammy, Sorry to hear about the myofascial. I feel your pain....literally. I've had pretty severe CMP for 8 years now and while there really isn't a cure, there are some things that can help. Unfortunately, one of them is meds. I know you have concerns about that possibility, long term, but I had my issues back then too. I finally got to the point where I had to accept that if I wanted some quality of life, the meds were a necessary evil, so to speak.

One other thing to look into is a type of massage therapy called Myofascial Release. Some Physical Therapists are trained to do simple myo release, but a Liscensed Massage Therapist is usually the better route to go. They get very specific training in this modality and it is not like regular massage or regular PT. So you need to find an expert, to get the most benefit from it.

I'm sorry you are feeling down. You are in my prayers, as always, my friend. If there's anything I can do, just let me know. God Bless, cmpgirl

 
Old 05-12-2008, 08:00 PM   #3
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Re: Good news & bad news, just feeling so down

Sammy,

I am so happy to hear there are no tumors!!

I know how long this has been going on for you and I am sorry to hear of the news.
You know Sammy I too do the same thing where I try to do the best I can to deal with everything and sometimes I just cant take it! It seems like it cycles for me. I will be ok with everything emotionally and then I will have a runner of really bad pain days and then I am discouraged and down on the whole darn thing.
Sweetie I really feel for you! I swear Sammy the only thing I beleive gets me through this deal is Faith. I hold on to the Faith.

I was very sad today myself. I went to my Pain doc and he explained a bunch about the results of the diskgram. I told him of the terrible spasms I have been having since then. He did his physical examination and I gasped when he lifted my left arm and he asked why? I told him that the last few days that if I try to lift my arm over my head it causes excruciating pain and burning in my neck.

He did give me a small amount of Valium to help with the spasms. I told him I did not want alot of them. Anyway I went to the pharmacy and filled 3 perscription and it cost $350.00 with my perscription discount card.
I feel hopeless sometimes you know!??

My friends in 12 syep programs go out and do fun things in recovery and I stay behind because I dont feel well. I totaly understand how you are feeling about the vacation. It just seems unfair that we 'can't"
My friend, I am right here with you and I want you to know that your not alone! You have all of us on here just rooting for ya and saying prayers for you! We do this chronic pain thing together...OK?

I really do hope that you will feel better soon.

Chrssy

 
Old 05-12-2008, 10:36 PM   #4
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Re: Good news & bad news, just feeling so down

I can completely relate to the "cycles" you are talking about Chrissy.

Sammy, we do almost always put on the "I'm okay face" but, for me, it sure doesn't take much to knock that mask off. Although, I usually will do it in the privacy of my office or just bawl while taking a hot shower. Your new diagnosis is both good and bad news, as you pointed out. On the good side, now you know it, it has a name, and you can learn more. The bad side, it was enough to take your mask off and make you feel and think about yourself....which we try so hard not to do.
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Old 05-12-2008, 11:33 PM   #5
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Re: Good news & bad news, just feeling so down

Ladies....What is it about the shower? I've had some of my best sob sessions in the shower. Maybe the guys do it too, but every girlfriend I have, cries in the shower. Sorry for going off track there. I just find it interesting that we do that.

 
Old 05-13-2008, 05:18 AM   #6
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Re: Good news & bad news, just feeling so down

Thanks ladies, Was so tired last night hid in the bedroom & just did not want to think about it anymore.
cmp, I feel alittle strange, for as much as we have posted is that what your problem is also? I just know that it is one problem that can't be fixed. Since this is new to me what can they do for this? My ribs get so swollen all the way to the chest area, which is what really bothers me. So what helps the most when it come to the myofascial deal? I am on the pain med & anti inflammatory cream along with flexerril, but don't like the feeling from that. I probably should be on a muscle relaxer I would think.

I have an osteo appointment today so I will be asking some questions. Took me months to get into this place & they are suppose to be excellant.
Marcia has talked to me about the myofascial release & my pt did abit, but my surgeon stopped pt & sent me here. My ribs are a mess.
I cant do anything much at all & for an active person that really gets me down. When the surgeon said no doctor knows what to do with the myofascial problems that really made me realize that I am in abit of trouble. I will just rest, ice & go to the osteo & hope for the best for now. I have a feeling I am in for PM soon. The surgeon will treat me for abit & that is it. I did not even think to ask him any questions about that yesturday. That is another worry. Chrissy, we have been going through all of this together for along time now & you have been such a support to me. Are you going to put a post on about your surgeons visit? I will keep an eye out.
Its just really hits home when a doctor pretty much says this is the problem & not much can be done. Here I am with a pretty high pain level when he is telling me this. You really think, Is this my life? What about my job & career? My husband said he was just happy nothing bad showed & just rest never mind about my job. Easy for him to say. I have always for the most part worked, & I hope this is not going to do me out of working for good.
Once again thanks everyone, we will see what the osteo says. Sammy

 
Old 05-13-2008, 09:15 AM   #7
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Re: Good news & bad news, just feeling so down

Sammy, I hope you are in a comfortable spot. This is going to be long. Sorry, but it is complicated. But I'll try to cover as much as I possibly can.

I have had several medical issues, mostly back related. Nothing that was ever operable or fixable. I have a total of 9 bulging discs, at all levels, spondylosis, stenosis and neuropathy and more. But the one thing that kept tripping up all of the specialists was the "all-over" pain I was having, that most modalities just kept making worse. Especially standard physical therapy.

I had a really bad injury to my lower back 8 years ago and even though nothing was "broken", the severe bruising that extended from the left front of my lower abdomen and hips, all the way across my back to the other side, caused most of the muscles in the lower part of my torso, my pelvic wall and my back, to be destroyed. Nobody had ever told me that bruising was caused by your body "bleeding out" into the surrounding muscle and tissue. This long term bleeding out, can destroy any surrounding muscle and tissue. Unfortunately, it went undiagnosed and untreated for some time.

By the time I first saw my current PM, the damage was already long done and there was nothing they could do for it. The thing is that chronic myofascial pain is caused by trauma or injury to the body, that is either untreated or undertreated for a long period of time. What happens is that the fascia which is the web-like system or structure that holds in all of our muscles, bones and tissue, becomes diseased. If we didn't have a fascia, we would not be able to stand erect. There would literally be nothing to hold us up. We would be this jiggly mass of muscles, bone and tissue.

The skeletal system and the muscular system are attached to the fascia at all kinds of junctions, all over the body. When the fascia becomes diseased, it gets thicker, tighter and loses its elasticity in either a few areas or many. This causes restriction, spasms and just plain old pain. When severe, lots of pain. It gets even stranger......when a person has CMP, the pain they feel is not localized pain. Meaning, the damage may be one place (the knots form there), but the pain is "referred" to another area of the body. It took my doc a while and lots of drawing and explaination till I was able to grasp the whole concept. Even now, it is har to totally explain. The really sad part, is that so many doctors do not have a clue about myofascial pain or it's causes, so they just ignore it or deem it a "waste basket" diagnosis. Then they usually focus on some other injury or just blow you off entirely.

You really need to find a physiatrist. This is an MD who's specialty is Physical Medicine and Rehabilitation (PM&R) They are trained to do one thing in particular. Diagnose and treat pain. They actually have a vast knowledge of the entire body and central nervous system and know how to treat it. That is what my PM doc is. And he saved my life. I'm not saying that he cured me. Sadly, there is no cure or fix for this. But he was the first and only doc who got me on a regimine that lets me live a somewhat functional life. I had NO quality of life before him. My pain had totally crippled me. There is another aspect to untreated or undertreated pain. It's called "hard wiring". When we become hard wired, our pain receptors become permenantly "switched on" and as of today, medical science has not found a way to switch them off.

One of the most important aspects of my pain management is the meds. As much as I didn't really want to have to take the meds for the rest of my life, it just came down to one major decision. Did I want to be able to do the simple basic things in life? Or did I want to spend the rest of my days in agony with no ability to function at all. I see so many people here on the board, that are at that crossroads right now. Including you, my friend. My heart goes out to you, because I still remember being in that place. It is not an easy time. The myofascial release therapy is something that has to be done by the right person. If it is done incorrectly it can cause even more pain and will do nothing to give you relief. The person performing the treatment has to be fully trained, in myofascial release, to give the patient the best relief. Aqua therapy is also good, because of the low impact.

This is not a pretty diagnosis. It is complicated and hard to treat and not fixable. It is routinely misunderstood in the medical community, and people who have it generally suffer greatly, before finding the right doctor to help them. I know this is not what you want to hear right now. It is a lot to take in. But I want you to know that there is some light at the end of the tunnel. I have lived a pretty good life for the past several years. It hasn't been easy, and I've had to give up a whole lot. But it has made me really appreciate the things I can do. And yes, I did have to stop working. It was just not possible anymore. My doc put it in real perspective for me. He asked me if I would rather give up my career and some of the things I did in my life, or be in a wheelchair. The answer came easier than I expected. I still struggle sometimes with accepting this, but for the most part, I have. I have never given up hope that someone will figure out a way to give me my old life back, but in the meantime, I just lean on my faith, my family, my friends and the few things like the meds and the massage, etc. to get me through.

I was the same as you Sammy. I took care of everyone. I had my mother at home for at least a year longer than her doctors wanted me to. (She had Alzheimer's) I also took care of my aunt (my mom's sister) who had broken both hips, had 3 major surgeries and was not ambulatory for years. We sold our house and moved to my mom's so I could take care of the two of them. I know those years took a toll on me, but I wouldn't have done it any differently. But now, I am the one who needs help. And I'd be lying if I said it didn't frustrate the heck out of me sometimes. But it is what it is. And God must have a plan. I don't know what, but I've accepted it as best I can.

Hang in there, my friend. I'll be glad to help you in any way I can. I know I don't have much to offer, except advice, but I can listen and support as much as you need me to. God Bless, CMP/MM (((((Sammy)))))

 
Old 05-13-2008, 09:37 AM   #8
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Re: Good news & bad news, just feeling so down

Sammy, dear...
I understand how devastating this is to get diagnosed with something is not curable or treatable. I want to share with you a little of my story and I hope it will help you to deal with your problems.
After all my treatmens and surgeries I was diagnosed with horrible condition called Arachnoidities. Also not curable, not treatable and in time gets worse and worse. This is severe scarring of spinal cord and nerves. I leave in pain 24/7; pain from neck to my toes. I also suffer from childhood RA which gives me a great deal of pain.

I considered non-operable and no DRs want to touch a patient with such diagnoses. I know that I have a very "grey" future with it, but so far...
(this condition comes from preservatives in steroid spinal injections, dye in Myelogram or blood gets into the sac during spinal surgery).

I try my best to do what I can to relieve some pain. Of course meds; I found a great PT place which is more like a SPA than PT for me (since they can't do much for me anyway). I get Tence Unit treatment, full body massage, body covered in moist heat pads... heavenly good!
Also accupancture is excellent treatment for any inflammation in a body. I am not allowed to have this done at this point, but you can try.
Very hard to have positive outlook and be strong when you in severe pain, but time is the best Dr at least for our minds.
Humans are much stronger than they think; we get used to anything and everything. If somebody would tell me 5 years ago that I will be able to leave with pain levels 6-7 every day I wouldn't believe them.
But life goes on, sweetie. When you count your blessings, you realize how much we have to leave for and no matter what - life is still so beautiful.

I bought a lot of meditation tapes, they help me a lot to relax. I strongly believe in mind and body healing. I used to do yoga for years and belonged to the gym practically all my life. This all in a past. As hard as it is for me to adjust to a new life, I realized that situation still could be worse.

Maybe it sounds weired to some, but I love to go for a walk when I can and I look at the sky, flowers, birds and I enjoy them so much... I pray every day that I am still here and I can see all this beauty. That I am here (I am 52 now) to enjoy my wonderful grandkids, my dearest friends and family. Still so much joy in this life, all depends on how you look at it.
I refuse to look at life through 1/2 empty glass, my glass is always 1/2 full...
Does not mean I don't cry sometimes, I am not sad sometimes, but I have my excellent tools to pick me up: my family, my flowers, tapes, friends, books and so much more.
You just look for all this in your life and it will be so much easier to deal with pain and all negativity which comes with territory...

Best of luck to you, Sammy.
We all here for you...
Moldova

Last edited by Moldova; 05-13-2008 at 09:41 AM.

 
Old 05-13-2008, 11:47 AM   #9
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Re: Good news & bad news, just feeling so down

Ladies I thank you so very much & am getting ready for the osteo doc. I will address some of what you have said on the other thread, for I want others to be able to read your advice in case it will help anyone else. As i said I am lost with this diagnosis. I knew by the bit I read here & by talking to the surgeon that I was facing a big challenge. Funny when the doctors speak a certian way, even the tone that you are in some trouble. The surgeon was super nice & not rushed (very unusual), & was really happy & I mean really that I am trying the osteo treatment, asked me a bunch or questions about the first visit, but at the end of the converstion he made it clear it this was hard for the doctors & he could not even tell me what to do if the osteo doew not work. I really felt depressed, hopeless, but today I am going to start looking into what i can do for me.
I know I have damaged myself, but noone has found the where it all started. They say perhaps from letting the shoulder go for so long. I am afraid, & I think anyone would be of what the future holds. Sammy

 
Old 05-13-2008, 12:00 PM   #10
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Re: Good news & bad news, just feeling so down

Sammy, It's a good outlook to want to try all you can. I tried many different modalities, over the years. Just be careful how much you push yourself, in regard to PT and things like that. Sometimes, just routine activity can make the pain worse or send you into a flare.

I'm glad the surgeon was nice and took his time. Lord knows we don't always have the best experiences with some docs.

Good luck at the appointment and please let us know how it goes, Hugs, CMP/MM

 
Old 05-13-2008, 12:20 PM   #11
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Re: Good news & bad news, just feeling so down

Dear Sammy,

I'm glad there were no turmors and all. That said, I can understad why you feel lost.

I am no experct in the area of PM; just getting my feet wet but I wanted to send you a cyber hug.
Good luck!

 
Old 05-14-2008, 06:33 AM   #12
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Re: Good news & bad news, just feeling so down

Tara, thank you so much, as pretty much PM is kind of new for me to. In fact am not even seeing a PM at this time, but sure wish I had one today. Once again thanks for caring, it means alot to me. Sammy

 
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