Question
QUESTION: Hi Jessica


I've had constant chronic pain for almost ten years now; I'm still trying to find out what is exactly causing the pain. Some doctors think I have Fibromyalgia/Myofascial Pain Syndrome, while others think it is nerve-related pain. I do have osteoarthritis of the TMJ for sure, but they don't know what is causing pain throughout my body

Whatever the case, I have tried various pain medications over the years, but they do not even help to reduce the pain. I have decided to stop taking/trying medications; until I find a treatment(s) that I can use in conjunction with medication.Here is my dilemma.

My family means well, but they are frustrated that I've made this decision. I've tried explaining over and over again #based on extensive research and discussions with specialists)that medication alone will not help unless I use it in conjunction with treatment; the underlying problem has to be addressed first.  But, they don't seem to understand/believe that notion.I am not willing to go through side effects from  medication, knowing there is a slim chance it will work. I keep trying to tell them I have mechanical problems that has to be addressed (tight muscles, possible misalignment bones, osteoarthritis of the TMJ,etc.) that cannot be addressed with medication alone.

I was wondering, how can I persuade them that I am not trying to be difficult (which is what I feel, based on their reaction)?  Even though they know what I am relaying to them is from research/doctors, they still want me to take medications/alternative supplements. According to them, "this medication may work this time." But, I don't want to go through uncomfortable side effects, along with symptoms I experience from my condition.  I know in my heart they love me very much (they show it everyday) and want me well. And, I know they are frustrated as well, and they so want to believe there is some "magical" medication out there that will cure/reduce the pain.  I just want them to truly understand I know what I am talking about (in this instance)and to respect my decision.  I apologize for being long-winded, any suggestion would be helpful.. Thank you

ANSWER: Renee,

Thank you for trusting me with your difficult questions. I know that both the physical and psychological pains that you are experiencing must be both frustrating and exhausting.

I will try my best to answer you question and also provide a couple of additional suggestions. I hope they help some, but you may want to also post this question in psychology.

I know your family means well as you do. One thing that is so difficult is that we can't change others' opinions, they must do this on their own. I'm so glad that you are doing your own research to be proactive and that you are letting them know that you are doing this (and not just sitting waiting for nothing). Have your doctors given you any options to consider besides medications or a game plan or thinking about further tests to perform? If they have any of the above, maybe explaining to your family that you do have a plan, and you are under physician's care. Sometimes knowing that a physician knows/accepts your choice can help others accept. I truly understand your decision not to play "guinea pig" with more and more medications. I know that's not a great answer, but its the best I can think of at the moment.

I am not a physician, but am a licensed massage therapist. I know you didn't ask the following, but I'd like to ask a few questions if you don't mind. From the sounds of things, you have tried both traditional and more natural/herbal approaches to your pain (whatever the diagnosis turns out to be). Have you tried vitamins/mineral supplements (which shouldn't have many side effects)? If not, you may want to look into some because I can think of a couple at least that help with muscle pain/spasms/similar issues.

Also, have you tried things like chiropractic adjustments, acupuncture, or massage therapy? I'm not asking just because I'm a massage therapist (I am someone who believes in moderation and both traditional and other forms of medicine). I know that oftentimes, different myofascial issues/disorders can respond well to both chiropractic adjustments and massage therapy. Everyone reacts differently, but from my experience maintenance levels of either or both (ex. from 1/week to 1/2-3 months) can provide relief enough for individuals to find it worthwhile. Acupuncture is an interesting practice and may also help. I know when it comes to insurance coverage, chiropractic medicine is often the only of the 3 that is covered. I just thought I'd ask to see if you had tried or considered those approaches. If you are interested in additional information about them, I'd be glad to talk about more specific information.

Also have you received any treatment for your TMJ issues? I know you said you have osteoarthritis in the TMJ joint(s), but usually TMJ issues are muscle and joint related. There are approaches that can be used (and even some that I believe you can perform yourself) to help provide relief.

One further suggestion I have (again pain related not directly dealing with your family members) is looking into a book called Fibromyalgia and Chronic Myofascial Pain: A Survival Manual. It contains information as well as self care techniques (including release of certain muscles (via trigger points which can be highly effective). I think at this point it is only available in book form and not ebook. There is a trigger point workbook that is available in free downloadable form, but I'd suggest looking into the above book or similar topic prior to looking at that book (which I can also provide you the information for).

I hope some of this information helps. As I said, you might want to post also in psychology. If you have any additional questions, please don't hesitate to ask. I'll continue to brainstorm about coping with your family. I will write back again if I think of something else.

I think, however, that it will be up to you to as I said "cope" with their decision to not accept yours. It will of course be terribly hard to do so - especially as they continue to urge you to take other medications etc. There is a support website that I recommend that may be very useful. MDjunction.com . It is a site that has a support group for about anything you can think of. In your case you could search for myofasical support, coping with family, fibromyalgia etc. It is not professionally run, but there are individuals in each group that have been coping with whatever issue (illness etc) for years as well as people just beginning to struggle. It might be beneficial to see how others have coped with similar issues. It is completely anonymous. It is both for family members and individuals experiencing an issue. You are welcome to read what others have posted or post questions yourself. You can also write directly to an individual (within the privacy of the site) if you feel you have similarities or a question for that individual person). That site might be my best advice because it will connect you with individuals in similar situations & you can see what has worked for others or not worked (realizing that everyone  is different, but it may give good suggestions or ideas).

I wish you the best and would love to hear back about how you are doing, how you and your family are doing, and/or if you have additional questions.

Always,

Jessica

---------- FOLLOW-UP ----------

QUESTION: Hello Jessica,

Thank you so much for your extensive response. Much appreciated.  Actually,I had a heated discussion with my sister (regarding the medication issue) which prompted me to write to you.  Soon after the argument, my mom, sister, and I sat down and had a productive conversation. The problem before was that we were not open and willing to listen to one another.  Somehow, there was a breakthrough and we resolved issues we had with one another. But, I am still interested in looking into support groups, which you suggested.  Below are the answers to your questions.


"Have your doctors given you any options to consider besides medications or a game plan or thinking about further tests to perform?"

That is where my problem lies. I cannot seem to get a clear diagnosis. Every doctor I went to have different opinions regarding the cause of my pain. A physical therapist believed I have Myofascial Pain Syndrome. And, based on my research, symptoms I experience are related to Myofascial Pain Syndrome. I have tried to get a full x-ray (to look at my musculoskeletal system), but they just brush it off. I get the impression that they are offended that I am "questioning" their expertise. Which is not the case; I just want concrete evidence that confirms the diagnosis.

 

"If they have any of the above, maybe explaining to your family that you do have a plan, and you are under physician's care."

I last saw a Rheumatologist (about two months ago), and he prescribed Nortriptyline (25mg), which has not relieved the pain. The first few days were promising; I was sleeping well and had less tension in my jaw muscles. However, that did not last long.

The problem is they do not have a plan because they really do not know what to do with me. I have had chronic pain since 2003, and relied on doctors/specialists at a county hospital (because they offer free services). It is time to for me to move on; my general doctor even told me that the doctors there are not equipped to handle my condition. It is too complex.

"Have you tried vitamins/mineral supplements (which shouldn't have many side effects)?"


Actually, my sister bought me some Potassium Gluconate (595mg), Magnesium (250mg), MSM double strength, Vitamin E (1000 IU), B-Complex Vitamin C w/Rose Hips and Rice Bran, Http-5, Multivitamins, and Calcium Citrate+D3.  I tried to take them everyday, but I developed stomach cramps and nausea.  So, I stopped taking them over a year ago.  Last week, my cousin gave me some powder mix called, Moringa smartmix (nutritional supplement)...too soon to tell if it works.



"Also, have you tried things like chiropractic adjustments, acupuncture, or massage therapy? "

I cannot work at this time, so I was really hoping I could get the medical care  (at the county hospital) necessary to treat my condition. I did have massage therapy (maybe 5 times) and acupuncture treatments (twice) at the county hospital, but they are no longer available (2007). In 2009, I did visit private medical clinics to have chiropractic adjustments (maybe 5 or 6), and myofascial massage therapy (about 3 months); some of my family members pitched in and paid the bills. However, I had to discontinue the visits because they could no longer help pay the bills. In hindsight, I really liked the acupuncture and myofascial treatments. Afterwards, I felt this warm sensation and relaxed. I was never pain free, but I could tell that if I had continued said treatments, I would probably feel significant relief. I have mixed feelings regarding chiropractic adjustments. I felt good afterwards, but the cracking noise freaked me out. The chiropractor said my muscles are so tight that my bones are misaligned throughout my body. If that is true, I hope there is an alternative treatment to take care of that. I have to regroup and figure out what to do next.

"Also have you received any treatment for your TMJ issues?"

No. I have an appointment with my general doctor tomorrow.  I will ask if she can refer me to a specialist to treat my TMJ issues.

I do have two questions:
1)What do you think of hypnosis to treat pain?

2)I have hard knots(I suspect are muscle) throughout my body, including along both jaw bones (anterior/interior). The hard knots in my jaw/neck refers pain to the back of my tongue and teeth, which makes it difficult to talk. Although I want to be pain free throughout my body, I would give anything to get some relief for my jaw/tongue pain.  Is there a treatment available to smooth out those knots.  I've tried stretching/massaging them, but they are so hard and tight.

P.S. I would love more information regarding the books you mentioned. Again, thank you so much-you have been very helpful.

 

Sincerely,

Renee

Answer
Renee-

I'm glad that you and your sister were able to have a conversation about your issues. & even more importantly, I am glad to hear that you recognized neither of you were open to each others suggestions. That's a huge step. I hope more progress will continue in the future.

Before I make any additional comments, I do want to be realistic  with you. When it comes to chronic pain issues, the amount of relief an individual gets/feels varies a good deal. As I'm sure you've experienced, what works for one person may not work for everyone. I'm not sure what your current pain level is (on a scale of 1-10 where 10 is the absolute worst you can or have ever had). Try to celebrate small victories and hope for continued success. You may or may not be pain free. & your pain level will probably vary day to day (as I'm guessing it currently does). Most people experience some level of pain in their lives (meaning daily) as they age (even if its a 1-3). I do have faith that you will gain significant relief..something that you will find manageable. I currently have a client who is frustrated with her pain and often says she's at a level 1. It is true that pain tolerance varies greatly from person to person.

I think one of the best things you can do for yourself is to try to get a good night's sleep. Sleeping helps break a chronic pain cycle. (lack of sleep will intensify pain)

What do I think about hypnosis? I don't have very much experience with it. But from research studies and individuals who have had a difficult time finding relief elsewhere, i have heard that it significantly helps. It should also help with sleeping. You do have to be open to hypnosis, if you have a negative opinion about it, you are less likely to receive benefit as your mind/body will be fighting it.

You asked about chiropractic etc. This information may/may not help you due to your insurance issue. One nice thing about massage therapy and chiropractics is that they are extremely complimentary. If you have the two treatments close together (ideally within a couple days but even within the same week is good), they tend to work better than either alone. Your chiropractor mentioned that your muscles are very tight (probably very difficult for him/her to adjust). That may make louder and more painful adjustments. Plus, you are less likely to actually "hold" the adjustments. Your muscles will tend to pull it back out. If you have a massage beforehand, your muscles will be more relaxed, easier for him/her to adjust and more likely to hold the adjustment longer. Alternatives I can think of to at least relax your muscles some before an adjustment would be an epsom salts bath or perhaps an electric stimulation unit if you have one.

When it comes to TMJ, massage therapy can help (probably easier, though awkward, via a massage therapist). The massage therapy trigger point book I'm going to list, will have suggestions about how to self-massage and work on areas that are particularly helpful for your jaw (some will be on your scalp too and surrounding areas). If you do see a massage therapist, see if there is someone who does myofascial release - it is extremely helpful for TMJ issues and really issues that you are experiencing. It works not only with muscles, but the facia or "skin" that surrounds muscles and also connects organs and holds everything in your body in place.

The Trigger Point Workbook: Your Self Treatment Guide for Pain Relief by Clair Davies
is an outstanding book. It provides information as well as several techniques for releasing trigger points which have specific pain referral patterns in your body. Since you are in a lot of pain, be gentle with yourself. Start gently.

Here is the website for the book. You can get it in bookstores or you may want to do a search for the ebook which you can download. http://www.triggerpointbook.com/

I hope this information helps. I will continue to keep you in my thoughts.

Always,

Jessica