posted 03-10-2003 08:40 AM            

Hormone imbalance can have an incredible impact on pain and how we respond to pain & sleep medication.
I was told this by a "Pain Specialist" (one of the good guys). He told me that synthetic hormone replacement sometimes would interfere with how the pain receptors responded. I don't know all of the technicalities, but he was one of the most knowledgeable people regarding pain that I have ever known.

I was sent to him after my disc were removed in Nov. 97. (This is a little personal, but I think relevant and applies to women with TMJD)Prior to disc removal, in June of 97, my ovaries were removed due to a pre-cancerous tumor.I was 45, but prior to this surgery, I had not experienced any pre-menopausal symtoms. Within an hour, I was in full blown surgical menopause. As a young woman, I was unable to take birth control pills due to severe side affects, (migraines, nausea, etc.) I had the same problem with Hormone Replacement.
I had the arthroplasty in Nov., was put on several medications for the pain and nerve damage and for the next 2 1/2 years tried everything (Synthetic)they have for HRT. I could not take any of them. I was not familiar with Mircette (I'm OLD), but I looked it up and see that it does have the same side affects as all the other types of birth control and HRT. Anyway, I ended up taking a hormone shot every 2 weeks( which was just estrone) and it did nothing but irritate my liver. I was almost psychotic from no sleep, I could not eat, and no sleep adds to muscle pain and problems. In short, I almost went crazy.
About 3 years ago, an Internist told me about a compounded HRT, that contains all 3 estrogens if you need them, plus progesterone and/or testosterone can be added. It is a bio-identical compound and is formulated for each person's needs. I have been taking it 3 years, mine has a little of everything in it and I have not had one adverse affect from it. Even though it is considered a natural replacement, it requires a prescription and a compounding pharmacy. When I first started using it, my GYN had a fit and said it would not work. Now, he is prescribing it to many of his patients who do not want to take synthetics. There is still some resistance among some Drs, but you can find those who will prescribe it, prescribe just the hormones you need and it works. It's called Tri-Est.

I know you said your wife is only 37, but some women do start to have hormonal fluctuations at this age and I have made a very long post here (sorry) to tell you it could very well be the reason she is not responding to some of the medications like she should. Sometimes severe pain and trauma can actually cause early menopause. A lot of Drs. are reluctant to discuss this, too, because they don't want to prescribe synthetic HRT at too young an age, they have always known what has recently been published regarding the dangers of synthetic HRT.
I hope this helps and that your last post meant you would be having her hormone levels checked. Fluctuating hormone levels can make you crazy, literally. This is one of the areas of medicine that has been neglected, due to it being a female problem.

Also, prednisone is a wonderful drug for many ailments and has to be used for certain conditions. My Mother has COPD and does not use it on a daily basis, but uses it quite a bit for lung problems. I have a cousin who has Rheumatoid Arthritis who has been on it for quite a while. Prednisone for any length of time does have very bad & lasting adverse affects. I hope you will be able to find another drug therapy that might be better.

Take care,
Cymy Sue

posted 03-10-2003 10:40 PM            

And since I'm a complete pain in the neck with my questions (and probably why the doctors shoo us away), I have another one. Ernest Syndrome refers to an inflammation of the stylomandibular ligament, which is located in the area just below the ear. Has anyone ever had any injections in this area to see if the ligament is inflamed? According to Shankland, who calls this a TMJ mimic, this is an easy diagnostic test, yet our TMJ guy dismisses it out of hand without telling me why. That area seems to be--make that, "SEEMS TO BE,"--the basis for my wife's pain. Anybody with any experience with this?

posted 03-11-2003 08:14 AM            

Has your wife had tests to confirm that inflammation is causing the pain? If you have made a post regarding testing she has had, I missed it. A lot of Doctors are reluctant to give oral and/or injected prednisone unless there is a serious disease that warrants it's use. Most DRs.(My Internist)included, believe that even a two week course of prednisone can cause adverse reactions. My experience with it has been with my Mother. About every 3 to 6 months she takes it a week to ten days at a time. The side affects are muscle cramping & weakness (due to potassium loss), blood pressure increase, insomnia, tinnitus, water retention, headache, and weight gain. She only takes it when she can almost not breathe. She usually gets a shot and then an oral pack. When she's on it, all of her aches and pains go away. After she's off of it a few days, the pain comes back. She has osteoporosis, herpatic neuralgia, herniated disc (lumbar) and arthritis. Steroid Therapy has saved her life, due to her lung problems, and given her a few pain-free days, but the damage it's done to her body is incredible. The scary part is, she only started using this stuff about 3 years ago at age 67. My Dr said that prednisone can literally "save your life" but it tears your body up. I think this is why prednisone is not normally used for pain management, even for the short term.

I have had tests several times in the past to determine "what" was causing head, face, neck, back, shoulder, arm & hand pain. MRIs, CTs, EMGs with Nerve Conduction Studies, and bloodwork, including cortisol production. During some of the worst "over-all" pain periods, nothing abnormal showed up. No inflammation, no nerve damage (except facial)& no muscle deterioration. I have been told after all of these testing marathons, that it has to be Fibromyalgia. (the first time this diagnosis was made was in 1986) I don't think I have it. I think I have muscle problems related to the pain & stress of TMJD.

I have Dr. Shankland's Books and find his theories interesting. I do believe that there is a possibility of overlapping syndromes. I also believe that most stages of TMJD can cause many seemingly unrelated symtoms. You mentioned inflammation of the stylomandibular ligament. The only info I've seen on that is the Earnest Syndrome Theory. I have had experience with the sternocleidomastoid muscle, which attaches to the sides of your face, down to your clavicle and then to the sternum. I've had several bouts of spasms with both sides and it is awful. The only thing that helped was massage therapy.

I have a problem with all muscle relaxants, especially the newer ones. (weird side affects). I also tried Ambien and it just made me feel worse the next day.
I also am unable to take antidepressants now, so I'm kind of limited with medicine.

In 86 when I was first diagnosed with Fibro (and not so chemically sensitive) I took Elavil, which helped with sleep immediately and helped with the muscle problems within a week or so. A couple of times, I took Robaxin (methocabamol), an older muscle relaxant, did not have any problems and it helped.

In the last 26 years, I have been tested for nearly everything you can imagine, tried every possible medication, been to every kind of Doctor and tried all kinds of alternative theories. (9 surgeries, 7 TMJD related)

I have found out that I am chemically sensitive (Drugs), my autonomic nervous system is shot and I have TMJD due to birth damage.

Trying to find answers will drive you crazy.
Back to the beginning. I know you said your wife has some cervical neck damage, but has anyone really tried to test for an accurate diagnosis causing the pain she's in?
If it's inflammation, there should be anti-inflammatories that would help.
If it's nerve damage there are medicines for that, some with undesirable side affects.(as you know)
If it's muscular (which the majority of mine has been)
a low dose narcotic, "klonopin", massage therapy and recently the splint is making an incredible difference.

I don't know if this post will help or not, but I wanted to mention one other possibility.( and you may have tried it) I was told a long time ago, that chronic pain brings with it a certain amount of anxiety and sometimes depression. I have only suffered brief periods of these with added stress (as with a death, Mother sick, etc). My Doctor has told me that even though I don't suffer depression, some antidepressants work well for sleep and chronic pain.
I tried them all and was unable to take them. We then tried "Klonopin", which works well for sleep, muscle spasms and periodic anxiety. A lot of Drs. don't like to prescribe it, but I have taken it on & off for years and not had a problem with it.

Maybe if you took a different approach, get everything possible ruled out, then you might have a better idea of how to treat this problem. That may be what you're trying to do. (Another thought: Have you tried a Rheumatologist or an Orthopedist?)

I "can" tell you that continuous severe muscle spasms can make you think you are going to die, can cause terrible anxiety and create a vicious cycle that is hard to break.

I do wish you the best in your seach for help,
Cymy Sue

[This message has been edited by Cymy Sue (edited 03-11-2003).]

posted 03-12-2003 02:41 PM            

I believe with cervical disc problems, nerves can be pinched or rubbed and cause a similiar pain.

I've had 9 lumbar epidurals in the last couple of years and did not experience any burning in the spine or adverse side affects.

This type of epidural works pretty well for disc problems. (I have 4 bad disc)
I have been able to avoid surgery for lower back and leg pain, so far.

They told me that Neurologists were doing Cervical epidurals for neck pain and disc problems. I did not feel comfortable trying that and managed to get the neck pain under control with massage therapy and medication.

A neurogist would most likely be who you would have to see to get a diagnosis on neck problems.

Cymy Sue

posted 03-12-2003 05:57 PM            

My situation was a little weird because I had a few other things going on as well with hormones and unhealthy immune system. Initially I had only a rib that kept going out - orthopedic guy and primary care both said to operate as the chiro couldn't keep it in place. Over about a year or so the pain spread and the last place it ended was my TMJ/neck. Not wanting to go under the knife I sought out someone who understood the big picture. I don't know about you, but I got real tired of being sent to a different specialist for every stinkin' body part that hurt. I much prefer my MD who does it all and my TMJ guy who does my splint and trigger point injections (they work together). Xrays showed no curve in the neck with a forward head posture and the MRI showed spurs and early arthritis in back and neck. Also C1/C2 were out of alignment constantly. The doctor has told me that even very healthy peopple with no pain show early signs of arthritis and spurs, as well as there are cases where someone who is in deep physical pain and the MRI/xrays show nothing. So - he uses his thumb to press on the areas that are problematic during the exams - trust me - you jump when he hits the site to be injected - and oh boy does that SM HURT when it's pressed - mine are so much better now. Your wife may have some big ol' trigger points in there too - they refer pain right into the teeth and jaw BIG TIME as well. I have the SMs injected when he does my TMJ. Plus my doc knows the referral patterns of pain so he follows those patterns to make sure the pain isn't being charged from another area (as is the case with trigger points). At one point in time he told me that continuing to get prolo would only be like a bandaid to help the pain until we dealt with the underlying issues and my immune system. Over the last year I've gotten the injections 4 times - as my body has healed I'm holding the prolo and I feel much stronger. Initially the shots were what got me from a lying down position to sitting up to walking normally. It can be an uncomfortable procedure - but to be quite honest there were times that having the needles injected gave me such relief I didn't care - nothing is worse than the debilitating pain. You don't get a few shots like with cortisone. The TMJ is usually 1-2 in the joint, in the SM area 2 shots, and the entire neck from the top of the shoulder across and up the neck towards the top of the head are probably 30-40 shots (thank goodness it's fast!). I got Demeral IVs my first times just because I was nervous but I don't anymore.

If you decide to take this route I would suggest 1 thing: get the hormone/blood work done early to get the most out of your prolo if you think your wife may have other underlying problems.

[This message has been edited by cathyk (edited 03-12-2003).]