Ok guys, as you can see I am using the best tool I have at my disposal, which is all of you! Have doctor appointment & really want to ask those of you who have dealt or are dealing with myofascial issues how to approach this with my doctor (osteo) whom I will be going to weekly for now. Of course I want to get the most help I can for this pain. My surgeon has forwarned me that this is one problem that is a challenge for any doctor.
As we all know it can take forever to find what is going to work. So I thought I would just ask away what has helped you?
I have heard about the myofascial release, which I am sure I will be recieving. Tens units have been brought up, injections & so on... I do not want to wait another year to find out I have just spent a fortune on another specialist & gotten no where. So I will start this one out armed with knowledge. I realize everyone is different but this is new to me & I don't know much about the treatmnets out there.
For those of you not aware of my problem I have major pain in the left rib & chest area & am recovering from shoulder surgery. This has held up my recovery, any movement of the arm/shoulder pulls on the chest & ribs. That area is inflammed & the muscles super tight. Bad location to have problems in. The left rib cage is hypermobile, so it has moved up vs. the right rib cage. to sum it up I am a mess. I have always had a super physical job & injured that area probably more then once. It does make sense that if the fascia is involved it could account for why the rib is hypermobile, if I am remembering correctly from my MA course. So I would really appreciate any advice or thoughts from you all. Is there any particulair doctor who deals with this problem & what are the odds that I will end up with a PM doctor? Sammy
Sammy, I wrote a really long post on your other thread. I'm sorry it was so long, but I know how hard it is to get answers about CMP. I wanted to be able to give you as much info as I could. If you like, I'll try to come up with a list of things that have worked for me and that have not. It might take me a little while, because I've been at this a while and there have been many.
I'll post back with what I can put together, OK? Hugs, CMP/MM
Ok ladies, first I don't care how long the posts are so never apolagize to me, for I blessed to have take the time to care.
I would very much appreciate any thing at all. This is going to be hard I know & thank god for you all. I am clueless as to all of it & will have to learn. To be honest I think I am still alittle stunned by the surgeons reaction.
I was seeing a Rehab. doc for along time but he would not deal wiht PM, so perhaps I should look for a doc. who specializes in both, what do you think?
TJhe surgeon is suppose to refer me if no improvement by june. I am get so afraid of being left in pain I can feel myself start to panic. I know its real, as does some others who have treated me but what if I end up with a pm doctor who does not believe in this condition. I get confused how they can come up with this dx & still say there are those in the medical community that don't agree this exists. I definantly need help. For example what is the med that will help me the most, a good muscle relaxer, I would think there must be something I am missing here. I was so looking forward to getting off these meds but I just think that is not relialistic at this time & the osteo is more of an naturalitic doctor so no help will come form that area. I am going to discuss the options with her today. I believe they do injections & therapy.
cmp, I know you will probably bring it up, but have you tried any injections? I am trying to go over what this osteo doc. can offer that may be of assistance. I can't bear the thought of another 6mnths to a year of going to snother doc. & getting no relief. I would be so very appreciative if indeed you could take sometime to think back for me. Does what I have described sound familier to you? All the tightness in the muscles, my muscles in the rib area will throb like crazy enough for someone else to feel it. I am off to see this osteo, not that I feel ready, but not an option. Bless you both for caring, Sammy
Sammy, The more I thought about this, the more I realized that I can only give you an idea of what works for me, but the damage to your fascia and muscles and the severity of your myofascial pain may differ from mine.
I can tell you that for me, any therapy that is not really low impact, is out of the question. My core muscles are shot. Destroyed. Moving at any level is painful for me. The meds and a couple of low impact things are what keep me at a 4-5 on the pain scale each day. Right now, I'm due for an increase, because I've been at around 8-9 every day for the last few months.
I have had luck with myofascial release therapy, and pool work. Nothing like vigorous swimming. Just walking in the water, gently treading water and floating. I had a great experience with a Reiki session on Mother's day, so I'm going to pursue that more.
I take an LA med, a BT med and a Muscle Relaxer. I think you need to see someone who is very familiar with myofascial pain and knows how to examine you to see just where all the knots or trigger points are before you can make a decision about what meds and what therapies will work best for you.
Because of the very nature of the condition, a muscle relaxer is always appropriate. I take Soma. It is the only one that has ever really worked well for my spasms. I have to switch off to a different one, every once in a while, due to tolerance, but always go back to the Soma.
There are days that I just call bad pain days when my entire body will ache and throb. The meds will barely touch my pain. I never know when it will happen, except if I have done something to push myself too far. Then, I know it's coming. It is really hard to predict what your pain is going to be like, because it changes all the time. Some days, the bulk of my pain will be in my lower back and hips. Some days it will be my shoulders and upper back. I also have the discs and the neuropathy etc. on top of the myofascial.
I wish I could be more specific, but it just isn't that kind of disease. With CMP you can have pain anywhere and everywhere. I do know that 4 different doctors have told me there is nothing they can do. And that unless someone in the medical field comes up with a cure or a fix, I'll have it and the pain for the rest of my life.
Sorry to be such a Debbie Downer, but I can only tell you what I've learned over the past 8 years. You may have a very different experience, based on how it affects you. Did you see the osteo? Let me know what he said, OK? Hang in there Sammy. With persistance, and support from us, you'll get there. I just know it. If there are more sppecifics that you want to know, just ask. I promise I will do my best to answer. Hugs, CMP/MM
cmp, I noticed you used the word throb, that is how I feel in the rib cage it will just throb, as I said before if someone puts their hand there they can feel it to. Painful.
Thank you for for your honesty.
The osteo said this has been overlooked & not treated for so long it has become chronic, I kind of knew that. At the present I go for osteopathic manipulative treatment. They use the hands to examine your overall body, back, joint, tendons, ligaments & muscles for pain & restiriction. Very hard to explain. This place was recommended by my surgeon & is one of the only ones that operates like this around. There is a wait to get in, so they must be doing something right. My surgeon was insistant that I try it. She (doctor) does find areas where I am having pain, sometimes I don't even realize it till she hits that area. She has been conservative with her treatment the first two visits but said she want to go full force the next one. I am just so sore she was alittle weary. The first thing she noticed yesturday was the chest wall on the left side was really puffy, as she put it, which I knew I could feel it, that is where I will have alot of muscle spasms. They don't really deal with conventions meds, no narcotics & such, more naturalistic treatments. Which is fine but will still need someone to treat the pain when the surgeon stops. He is suppose to recommend me to PM if the pain is still existing. I am really nervous about that. It makes sense that a muscle relaxer is needed but I don't like the flexerril, makes me feel to out of it. I half it. I have tried skelaxin & it does nothing. After yesturday I am having alot more spasms, alittle concerned about that.
I always feel swollen on the left side & when its bad it can go to the hip, it is always bad when my monthly comes around, in fact I am getting where I panic when that time comes. I am bringing that up next visit to the osteo.
I am in a binder to try to keep the ribs from moving around to much. It does make sense that the ribs have moved upwards if the fascia is damaged or injured. As I told Marcia, this is blowing my shoulder surgery right out of the water, really holding me back with that recovery, loosing the ROM in that shoulder. If I use that arm it aggravates the whole left side. In fact that shoulder is becoming more painful. I hope I did not go throught that surgery for nothing. Marcia has held my hand through all of this & I don't know where I would be without her.
I was wondering if they tried any type of injections, or tens unit on you? Also should I ask the surgeon about a PM who is a Rehab. doc to? That may be alittle tougher. I take perc, & a compound cream, flexerril, & when it is really bad like on my cylce motrin. I could take the motirn everyday but try to take the least amount of everything. When it is bad, like you, nothing helps much at all, I can't overly use that side or I will pay, & most of the time it is the next day that it will act up & stay that way for a day or two no matter what I do to try to calm it down. Does any of what I am saying sound familier to you? All I have to go by to make sure I am getting the correct DX is to compare the symptoms & such to others already diagnosed. So I will probably ask you often that question. Thank cmp for you time, it is appreciated more then I can say, Sammy
hey sammy,i know we already covered this in the other post so i needed to ask CMP something.
CMP, just wondering since you have been getting the myofascial like me,if the person who does your myo also happens to do whats called craniosacral therepy? this combined with the myo(my PT does both at the same time?)has done absolute wonders for a really heavily damaged overtight nasty area up in my neck,shoulder and upper back areas. the cranio is am amazing thing in just how it all works in 'unwinding' the actual CNS from previous traumas and to relaese areas that myo alone wont hit alone. its just something that has helped me tons where NOTHING else had ever helped. i lost count of all the trigger point injections i have had at about 100. stopped those completely since i started seeing this really amazing PT person for the myo and cranio last year. this was actually highly recommended by my PMs NP. i also found out my NP also sees this guy for the same therepys. just thought i would pass this along to you since it sounds like we both suffer from some very extreme myofascial issues. i also use the biofreeze and the lido patches/ointment too. every little bit helps,ya know? Marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Sammy, the type of pain you have sounds very much like myofascial, so I don't think you need to question the diagnosis. I wish I could say that it was something that is more fixable, but your symptoms are definitely myofascial symptoms. Does the osteo talk about feeling large knots? Some of the knots, or permenant spasms, as I call them, are very deep, and for my doc to feel them I have to be laying down, and it hurts to high heaven! (Only for a minute or two)
As far as MR's most of the better ones, in my opinion, will be quite sedating in the beginning. This does get better with use, however. My PM said that the reason the Soma works so well for me, is that it is a different type of MR. It has properties that the others do not. Not sure what, but I've been meaning to do a little research. I think in order to get one that works well, the sedation you feel in the beginning, is worth the end result. But that's just my opinion.
Marcia, I believe I have had the craniosacral therapy along with my myo release, because the LMT who does mine, spends time around my head and neck and shoulders, at the beginning of my sessions. Maybe this is the same or maybe something different. Could you explain what your therapist does, in this part of your treatments? Then I could tell if that is what mine is doing.
I will answer to the best of my ability. Yes she does touch or hit a certain spot & it hurts until she works it out, which is done pretty quickly. I assume that those area's are knots or perhaps could they be triggerpoints? This is new to me. I did have the trigger point injections couple times in the shoulder area. She never calls them by a certain name she will just feel that spot & make a statment like wow, can you feel that? does it hurt? & so forth, of course it always hurts. What she does is so hard to explain, she is like a chiro & pt rolled into one, & works on the entire body if need be. She focuses alot on loosening up the area. I ask her about what she called it yesturday, but of course got lost in the explaination. I suppose you could look up osteo manipulative treatment. Marcia's pt explained abit to her about it, & respects this treatment. I am worried because she took it easy with me & I was in alot of spasms this morning, more then I have had in along time. Not a good sign. I did look up myofascial & yes it does sound like that may very well be it, but thanks to Marcia I believe I may have discovered a particulair muscle that is causing me alot of problems,if not most of my problems. First time I have seen something with just about every single symptom I have, I think that perhaps that is the area that was traumatized & plan to research more & ask alot of questions. Noone can seem to find where it started or where is the source of it all, so maybe, just maybe this is it or will help the doctors.
I will say I am glad to have someone who can identify with this throbbing business, it can be strange at times. It pulsates like mad at times. Just is weird. Makes sense that if we can find the root of the problem perhaps we can work on really improving & gaining some control. I think I would weep with joy, I dont think I know I would. We will see, hopefully I made some sense here. Sammy
Hey Sammy, I am glad that I can be of some help. You know, it wasn't until I went to a couple of Pain Groups, a couple of years into this, that I found anyone else who had CMP. I wish the group that I went to was still around, but our local hospital shut down the entire PM department, due to lack of funding, about 2 months after I started going to group. It was so sudden, that I never got any contact info from those people.
It is a really complex disease. (and yes, it is now considered a disease, not a syndrome, by the AMA) Most docs don't know that yet. Anyway, as I said, it is complex because it can affect the whole body and the pain is often referred pain, not localized. The spasms can be permenant in nature or can travel or both. Most docs know so little about it, that they have no idea how to treat it. I would think an osteo would have a good working knowledge of it, from what you describe.
Because my trigger points are so eratic, injections never did much for me. I had them, about 5 different times, in several locations, but the most of what I recall, was additional pain at the site for a couple of days and then back to the same pain, so I stopped. A TENS unit only made it worse for me, because by the time I had the electrodes placed in one position, I either had pain from all the twisting to get them on, or the spasms went somewhere else.
I've found that in order to accomplish say, housework, I have to do a little, sit for a while, do a little more and sit some more and so on....It takes me 5x as long to clean, but I get it done. If I push myself to do it all at once, forget it, I'm toast. It's really a re-learning process.
At least if you can get an idea of where your worst spasms and knots are, you can avoid aggrivating them more. Sounds like the osteo is trying to find that out, so I'm glad for that. hang in there hon, it looks like you are on the right path. And if you can find either an anesthesiologist or physiatrist as a PM doc, you'll be golden. Take care and God bless, CMP/MM
Thanks cmp, I did not realize that it was a disease, perhaps that what the osteo meant by saying it was allowed to become chronic, I am guessing of course. My sisterinlaw left me a message that she had met a lady with myofascial problems & really learned alot & would be calling me later to fill me in. I have to say I am suffering today & am abit afraid of next weeks session with the osteo. I can't stand the spasms in the chest area, dang feels like a heartattack. I hate to say it but I know the treatment set it off.
I am tender in spots today & that only occurs if I over do it, other wise for the most part it is just painful, bad location, any movement or bending agrravates the ribs, the arm/shoulder movenment aggravates the chest. I am quickly loosing ROM in that surgical side & that really bothers me. I would be willing to try the injections although they did not help the shoulder, one set did dissolve a massive headache I got from pt. I remember the rehab. doc. saying he could see the knots move as he injected, & when I was in pt before therpay that pt said I was always in full muscle spasm in that chest area. NO way can I continue with this osteo if it makes it worse, I hope she has a plan B.
I started to look up info. on myofascial today & was glad to hear its not fibromyalgia & there is a difference. Not comforting when alot of doctors know nothing about it. It is painful & I sympathize with you, just moving can make it hurt, at times just moving wggling my leg can cause it to hurt.
I have been doing my house work just as you said, alittle at a time. I feel like joining the seniors center (no offense seniors) but any more they move faster then I do. I will run by you what I hear from my sisterinlaw. Sammy
Sammy...Is the osteo doing treatments on you, or is she just doing diagnostic work. The reason I ask is that if you are having any manipulation and it is deep tissue, you need to take it easy with that. The myofascial release is different than regular therapies.
It starts out for the first few sessions, really lightly, like butterfly wings. It gets very gradually increased as your body adjusts. That is why it is the only type of therapy I get. I can not take regular therapy modalities. You have to make sure that whoever does the myo release, is specifically trained in it. A lot of PT's, and massage therapists say they know how, but they only get a fraction of the training during school.
About ROM, I have none in my lower torso, my neck and my shoulders. I have to have my husband back the car out of places that I would have to turn my body or neck too far. So I understand how that feels.
The fascia, when diseased, can affect your muscles, nerves and joints. So, I also have very sore joints and some nerve pain, as well as the muscle spasms and pain.
I hear you about the senior center. I know a couple of people in their early eighties who are more active than me.
If this treatment with the osteo is causing more harm than good, don't be afraid to speak up and let your doc know you don't think you can do this. If he really knows anything about CMP, he should understand and be OK with stopping. There is no sense in causing yourself more pain, if it isn't going to do any good.
Let me know what your sister-in-law has to say, OK? Hugs, CMP/MM
cmp, how funny I have to have my hsuband to the same at times it someone parks to close, I just can't seem to get out of the dang garage, & my daughter does it everytime, parks so I can't get the dang car out, I am to limited with my ROM.
The osteo is treating or trying to treat the problem I really feel thanks to Marcia I may know where a majority of the problem lyes. I will talk to her about it & my pt. Although I am not in pt for now.
I am worried, way to sore after that last treatment. I have to go to her because the surgeon made it clear & for know he is prescribng my pain meds. I just hate this having my life in the palm or these doctors hands. I really think she put to much pressure on that post op shoulder, my arm has been really hurting, worse then usual. Because she is a new doctor I do have a fear of offending her, but no way can I go through anything that is going to make the pain worse. I was really disappointed, I really heard nothing but good things & perhaps got my hopes up. I have brought up the myofascial release therapy twice, & twice she has said she does abit with other forms of treatment. This problem is in an area that makes it hard to breathe when it is bad & I can't handle anyone causing it to get out of control, & just think she was taking it easy with me. I hope she has a plan b. I am going to see my pt & asking her about someone who does the myofascial release just in case. I have to tell you I am worried about it all. I was sore last night & it hurt to lay on that left rib area when I would turn on my side. I am loosing more & more ROM in that surgical shoulder. I have less now then I did 3 wks ago. Noone is addressing that issue, & then I have to worry about the surgeon recommending me to pm, I really am pretty sure you have to have a referral. I am telling her how dang stresfull this all is, heck on top of that I would like to return to work some day. I have to contribute here. My income is needed for the most part. I don't get it, after all this time you would think someone would have reffered me to pm. Everytime I go to urgent care they ask me why I have not been referred. To many dang doctors, being sent from one to the next, & I am getting tired of it all. Since I have been told no doctor really knows what the best way to treat this that would indicate to the need for pm. I am tired of the worry & suffering. I want some of my life back, if pm can help then don't I deserve a chance to have some quality here?
I just am at the point I don't trust any doctor right now. My husband is upset that I am willing to go into pm, but he knows I have to have something. I am sure he is tired of ER's, urgent cares, & I need to work just to pay for the darn medical bills. My sister in law did not say much, other then the lady said she was told it could take up to two years to get better, but I honestly believe if it is something pretty new then how can any doctor that much, even my surgeon admitted he did not know what else to do. This is so hard. On top of it all my monthly is here & I can now expect the pain it sky rocket as it does every month. I am venting & am sorry, I am just so worried & scared of it all, & of being left in pain. I am so grateful to you for taking the time to educate me & care. I can't believe how wonderful you all are. Without Marcia I don't even want to think about how hard this would have been, she has become a better friend then any I have here where I live. Thanks be to God for all of you that care. Any advice on how to handle telling this osteo the bad news, I hate to say this but sometimes women doctors are the worst to offend & you never know. I know I am crossing a bridge before I ever get there but once bitten twice shy. This next visit will tell me alot about this doctor. Thank you, Sammy
Sammy, I'm so sorry you are going through all this crap. I remember seeing something on one of my doctors reports about myofacial pain. But nobody has ever said anything about it. I know one time the PM was doing trigger point injections and he hit one point and my whole upper right back jumped. He was freaking out! The nurse even saw it. But like the rest of my "treatments" it never happened again.
You brought up ROM. I have lots of "fun" with that. I am beginning to get pretty good at backing up using the mirrors. Of course when somebody is in a big hurry and I'm trying to back out of a parking spot it can get a little stressful. I avoid driving downtown GR or anyplace where the traffic is crazy. I will never drive in Detroit again. Something about not being able to turn my head very far makes things like lane changes a real challenge.
Oh well, we all have our cross to bear. I thank my Lord for the ability to drive period.
You take care.
Sammy, I'm so sorry hon. I know how frustrating this all is. The osteo is doing what she knows, and unfortunately, there are so many who really don't know what to do with myofascial pain, that it becomes this roller coaster of trial and error.
Just remember, this osteo is not the boss...you are. Nothing against her personally, but only you know what helps and what hurts. As I've said before, traditional modalities of PT and massage are many times counter-productive and cause more harm than good. Don't let anyone, including a doctor, tell you what works and what doesn't. I just told my doctor that I knew, without question, traditional therapies were making my overall pain worse, and I did not wish to continue. If the doc holds this against you for some reason, that is his problem. (I am assuming the surgeon referred you to the osteo.)
In searching for the right PM doc, it is of the utmost importance that you ask if this doc has a thorough understanding of myofascial pain. We, as patients, have every right to "interview" potential health care providers. And to choose the one(s) who best suit OUR needs. CMP is a very complicated disease and it is complicated to treat. Remember.....A physiatrist or anesthesiologist make some of the very best PM's. If either of these are available in your area, I would start with them.
I know your husband may be upset that PM has become the next step for you, but if it can improve your quality of life, then I'm sure he will change his mind. Is it because of the meds? Is he afraid of addiction? Because with the amount of pain you have, there should be no worries about that. Maybe you should have him read some of the older threads on here, where several have provided excellent information on dependency vs. addiction. There have been many studies over the years in regard to this concept, and it has been proven that only about 1% of CP patients, develop a psychological addiction to narcotics.
I know it stinks. It is so hard to come to terms with being chronic. But the sooner you find a good and caring PM doc, the sooner you will have the possibility of being more of the "old" Sammy. I'm not saying you will be 100% of your former self, but you certainly can't go on like this.
Hang in there, hon. I think about you all the time and you are always in my prayers. I pray every day that you will finally get the relief you so desperately need and deserve. Gentle hugs, CMP/MM