connective tissue problem?

[dkdreamer1]

I don't know if anyone can give me a clue about connective tissue disorders? I have posted a few times with some of my symptoms and history, but am beginning to think that i have a systemic issue or possible a pain problem. I have just under gone my 22 surgery a week ago to have a hernia repaired caused from a surgery in aug to repair 2 hernias and to redo a fundoplication. It seems to me that no matter what is "repaired" there is always something else about to break. The reason i am asking the tissue question is i have had a leak in my csf for 16 months that initially occured spontaineously. They have done numerous blood patches with short term help, but it reopens again. I am suppose to go to Mayo, but am not sure as my medical bills for the last 2 years alone have exceeded 300k. our part being tens of thousands. Mayo doesn't accept medicare so it will be quite expensive. All of my Drs. here have found that i have a leak but have not been able to pin it down exactly. i have severe tmj (9 open sugeries and countless injections and proceedures). I have fibro. I have had 3 major car wrecks, (2 with the car being totaled) none my fault! My back is a mess that is quickly going south as i have mentioned before. This is going to be addressed in detail after the first as my pm is concerned that i am going to have permenant nerve damage. Wounds, even a bug bite take months to heal sometimes. I am double jointed, tall and somewhat lanky and 2 of my docs have mentioned marfans. I could easily write a book with all that i have had happen and done to my body. The above are the most pressing at this time.

Anyway, it seems to me that i am on sensory overload when it comes to pain. My leak causes excrutiating headaches when i am up, often leading to migraines lasting days to weeks. Sometimes requiring infusions to end the cycle. The leak also is causing my brain to sag irritating the trigeminal nerves and messing up my autonomic funtions. My back is so bad that i often have to wake my husband at night just to help me roll over. I have actually started using lidocaine patches and cream in an effort to reduce the pain. Of course my gut is a mess having had 2 surgeries in 4 months. My tmj has bone spurs so large again that facial nerves are being pinched. My maxiofacial surgeon has sent me to university of alabama to work towards total replacements. The Dr. There said that there is not even recognizable landmarks in my Mri. I was scheduled to do the replacements, but cancelled as i have not been well enough and the Dr. said it is a very long surgery and recovery and he wants me well for 9 months to a year in order to have the least risk of infection and the best chance at sucess.

I know this is extremely long. I just am at a point where i don't know if i can do this much longer. I feel like all i do is pop pills to function with the pain always waiting. I have been on avinza in the past with some success until the dose had to be increased and i threw up all of the time. Because of my stomach issues and they believe my back nerve issues my intestines shut down and i had to be in icu for a week. This along with my bladder had problems for about 8 months.They are doing much better but i think that the narcotics didn't help. My pm and i have been managing with norco, zanaflex, and benedryl im. This is woofully inadequate. He is willing to do whatever and prescribe whatever but i am reluctant. I sometimes think that nobody can have so many body parts both hurt and malfuntion without there being something bigger to the picture. Do any of you think that chronic pain breeds more chronic pain? Like is our headache really as bad as we think or is our pain sensor out of wack? And if that is the case is there a way to recalibrate it? Just wondering.

I read here often and appreciate the openess. I hope that this is a safe place to be honest as i feel like i am sometimes on an alien planet when it comes to what i deal with and those arround me don't and can't understand. My husband is great but doesn't like me taking narcotics. He would rather i rest and not push myself. At times i love him for his patience but at others i want him to understand that i need more quality not just quantity to my life. I told him yesterday that i don't even know who i am anymore. In my mind i go places and am the same as i was 25 years ago. In reality i feel my real self is lost and i live with a stranger i don't recognize. Anyway thanks for listening. It is tough this time of year.

DK

[GardeniaGirl]

Hi there DK - of course I had to reply to you because, if you look at my signature, my primary diagnosis for the past 10 years has been "Undifferentiated Connective Tissue Disorder" !

Here is one link on Connective Tissue Disorder that I think is informative:

http://www.emedicine.com/med/topic2937.htm

It sounds like you some different things going on than I do -- my disease is presenting very similar to rheumatoid arthritis, although I really do not meet the criteria for RA. I also have a lot of migraine headaches, and some vascular problems in my feet which cause pain.

But, what I can relate to is this: the large number of medications needed to try to function at an even basic level, and the difficulty in finding pain relief -- my body tends to be over-reactive to many medications, so finding ones to control the pain is very hard.

You can do a search on my posts here and see how I have posted about these things many, many times.

I do understand your frustration all too well. I often post here (at least every other month or so) about how hard it is to find the motivation to keep dealing with being ill, year in and year out.

I know that the disease I have is systemic, so its not like I am just getting used to some pain in one part of my body and then adapting around that -- I am dealing with constant fatigue and/or nausea and/or dizziness and/or weakness and/or mild or medium or severe pain in one or multiple parts of my body and/or some combination of all of those at just about every waking moment.

Then you add side-effects from medications on top of then, then sleep problems, GI problems, anxiety/depression, etc .... it just never ends.

It is very tiring.

I am going through a phase with very high pain levels and basically my doctors are struggling to find a med combo that will keep it down to a relatively tolerable level.

anyway, this is a wonderful forum.... sorry you have to join us, but its a good place if you've got CP in your life.

Take Good Care
GardeniaGirl

[Mark N]

DK, yes it is possible that taking so many pills to treat your pain can trigger more pain and it is something Steve just brought up in a recent post. It would be easy with all you have gone through to feel it is never ending and how much more can happen to you. I am sorry you are going through all of this and suffering the way you are. You need to get a good plan of action for your pain levels and then get adequately treated so your pain is under control.

I think most of us go through a period in our lives that we get down realizing the rest of our life will be like this. I hope you can work past this stage and come to a sense of acceptance for something you can't change. It is understandable that you would have sensory overload with all that has gone on. I hope yo0u can stabilize enough to improve your health to the point they can do necessary surgery.

Come here and vent all you need to work your way through the feelings of helplessness, overload, and any other feeling that comes along. I wish yhou the best and hope the New Year brings an improvement in your health.

[gizmogirl]

dear DK.
I am so sorry that you have multiple sources of severe pain. I am really impressed at your ability to write so well when you are feeling so awful. I think that getting you on STRONG enough (narcotics whatever) painkillers and getting your CSF stable are more important than wondering if you have some psychological or systemic components to your pains. You can work on that stuff later. I take methadone because it is cheap, but there are others just as strong (lidocaine patches never dented any of my pain!)

Opiates will make you throw up usually only if you start at too high a dose or increase your doses too quickly. Opiates can give you constipation, but eating mushy food for your TMJ with plenty of Benefiber might allow you to work your way up to a dosage that is strong enough to make you feel like you are definitely more comfortable. There is NO argument against narcotics anymore, because doctors have done studies to prove that patients heal faster and more completely when they are NOT in pain. Maybe you have a systemic problem. Or, maybe you are in so much pain that your body can't heal and is falling apart. There's only one way to find out if pain is your main problem. By reducing it significantly and then seeing where you are at. And even if you become dependent on strong painkillers, your mind still functions, and you are not addicted - you are dependent, which means you have to taper off instead of stopping all at once.
I have had those CSF headaches, and I go to the emergency room when I get them for a shot of Toradol and as much painkillers as I need. You are a very brave and strong person, but I would like to see your strength put into testing and treatments, not fighting a single twinge of unnecessary pain. You are still going to have pain with so many problems, but you owe it to yourself (and your husband to you) to know that all the old prejudices against strong painkillers have been proven to be nothing but just empty prejudices. I'm so glad you wrote in - there are always thoughtful people here who are going through some of what you are going through. Many will be thinking of you now, so please check in again and tell us what's happening!
I will follow this immediately with a short article you can use with your husband, doctors, etc. about managing pain and where you can find more.

Jane

[gizmogirl]

The following is from the New York Times' Jane Brody, health science writer:
(you can search nytimes.com for her name and 'pain management' to get many more good articles to show to your husband, doctors, etc.)

When It Comes to Severe Pain, Doctors Still Have Much to Learn
By JANE E. BRODY

My surgeon did a marvelous job replacing my arthritic knees and, at the same time, straightening my terribly bowed legs when, at 63, I decided to have knee replacement surgery.

Although a class given at the hospital before the operation repeatedly emphasized the importance of adequate pain control, the surgeon and his helpers were not experts in treating prolonged, debilitating postoperative pain.

They are hardly alone. Pain management is not generally taught as a part of medical education, not even to residents in orthopedic surgery. As a result, most doctors are clueless or unnecessarily cautious about treating pain, especially chronic pain like that caused by incurable neurological or muscular disorders.

They are especially ill-informed about opioids, which are synthetic versions of morphine, the most potent painkillers that can be taken by mouth.

As Dr. Jennifer P. Schneider writes about opioids in her book "Living With Chronic Pain" (Healthy Living Books, $15.95), "Fear and lack of knowledge of these drugs prevent many doctors from prescribing them for people whose pain is caused by anything other than cancer."

Yet, she continues, in 1995 The Journal of the American Medical Association lamented the reluctance of physicians to prescribe needed pain medication. The journal stated: "Bringing about significant change may depend on empowering patients to demand adequate pain treatment. This empowerment will not come easily, especially if opioids must be used for pain relief and if the pain is of a nonmalignant origin."

Pay attention, current and future patients. The journal's message is really for you: Learn what you can about pain control and insist that experts in treating pain help you through it.

A Painful Lesson

I did not know that the dose of the sustained-release opioid OxyContin (oxycodone) that I was taking - 20 milligrams twice a day - was a "low" dose until seven weeks after surgery.

I also did not know that the other pain drug I was prescribed for breakthrough pain, Percocet, was really short-acting oxycodone plus acetaminophen. Because my pain was frequently intolerable despite the two doses of OxyContin, I was taking as many as 10 Percocets a day, incorrectly using it as a maintenance drug.

Yet, when I complained about the severity of my pain, which had me crying for several hours a day, the surgeon added an anti-inflammatory drug and told me to take half the OxyContin and Percocet. No surprise that my pain remained unrelenting and occasionally worsened.

I called the surgeon's office weekly and reported my minimal progress in pain control, but at no point was an increase in pain medication suggested, nor was I referred to a pain management specialist on the hospital staff.

When, at seven weeks after surgery, I spoke to Dr. Schneider, a Tucson-based specialist in pain management and addiction medicine, she chastised me for not being more insistent about getting adequate pain relief. The trouble is, when you're experiencing intense pain, it's hard to be proactive about anything.

I know now from speaking with several doctors who routinely treat chronic pain patients that my story is hardly unique. Millions of people suffer needlessly year after year because their doctors do not know how to treat pain properly and don't refer patients to doctors who do know.

Many doctors are afraid to prescribe narcotic drugs like oxycodone, fearing they will create addiction problems. But that in fact rarely happens to chronic pain patients who don't have a history of addiction. When a pain patient needs increasing doses of a narcotic, it's nearly always because the pain worsens, as often happens in patients with advanced cancer. Patients do become tolerant to side effects, like grogginess, but rarely to the pain-relieving properties of these drugs.

When the Nerves Respond

Furthermore, undertreatment of pain can actually cause a chronic problem when the nervous system changes in response to continuing pain signals. Nerves can become permanently hypersensitive to painful and nonpainful stimuli, like touch or vibration. With chronically undertreated pain, the painful area can also spread well beyond the original injured site, as happened to a man I know who now has to take 500 milligrams a day of OxyContin.

"The way to prevent this undesirable outcome is to avoid repeated pain signals," Dr. Schneider said. "Long-acting opioids like OxyContin, which provide many hours of consistent pain relief, are more effective than short-acting opioids, like Percocet, at preventing pain. It takes less drug to prevent recurring pain than it takes to treat it."

However, Dr. Schneider wrote, "Because breakthrough pain is common in patients with chronic pain, patients being treated with long-acting opioids often need a second prescription for an opioid with rapid onset" to treat breakthrough pain. These second medications are "meant for transiently increased pain, not as part of your regular pain regimen," she explained.

When I read this, I realized I was on the wrong track, taking too little of the long-acting drug and too much of the short-acting one. The latter had, in effect, become my maintenance drug rather than the one I used now and then when, say, I had physical therapy or spent hours riding in a car.

Surgeons may know a great deal about cutting, repairing and sewing up, but they are not experts on pain control, though I think they should be. I know of an orthopedic surgeon in New Jersey who won't see his knee replacement patients for two months after surgery because he doesn't want to see them when they're suffering.

As it turned out, my internist knew far more than my surgeon about treating pain. He has many elderly patients with chronic pain and knows very well how to treat it. I realize now I should have sought his help from the beginning. Or I should have asked to be referred to a pain management specialist at the hospital where I had my surgery.

Let's Fix What's Broken

First and foremost, patients need to be proactive and insist on the help they need. If patients are not able to do this for themselves, an advocate should do it for them.

Second, every person with prolonged or chronic pain should become educated about the huge range of medications, therapies and complementary remedies available to treat pain.

"Most chronic pain patients receive more than one type of drug and end up taking a cocktail of pills," Dr. Schneider said. The many possibilities include anti-inflammatory drugs, muscle relaxants, drugs like anticonvulsants that treat nerve pain, antidepressants (in doses much lower than that used to treat depression), topical analgesics and sleeping pills.

In addition to using combinations of drugs to control pain that does not respond to one remedy alone, Dr. Schneider writes that patients may be helped by physical therapy, exercise, acupuncture, electrical stimulation, heat, massage, yoga, hypnosis (including self-hypnosis), cognitive-behavioral therapy, biofeedback and various relaxation techniques like guided imagery, meditation and progressive muscle relaxation.

[Kathi49]

DK,

I am sorry too that you are suffering like this. :( And agree with Mark and Dr. Steve. Especially what Dr. Steve mentioned yesterday about the opiates. The more I read the more I agree with his statement. I also wanted to add that besides the spinal issues I have, I also have multiple things going on. And that's pretty much where I will leave it for now since I see my PM on January 4th to go over my bone scan. I am also supposed to start Cymbalta and aqua therapy. Oops, I also wanted to add that being tested for any connective tissue disease was something I had done several years ago...and NO, did not have anything wrong in that regard. Same thing with small fiber PN...nothing showed up. Or rather the QSART I had done almost didn't show up per my Neurologist. So, some of this is definitely a CNS problem...nerves just wound up. And I could discuss med after med I have been on and at high doses too. So, managing it and/or keeping it tolerable is where I am at right now...just so that I can get to appointments and PT. I hope you can get stabilized. :)

[dkdreamer1]

Thankyou to everyone for taking the time to reply. I do appreciate your input and insites into what i am dealing with. I know that the way i am dealing and functioning with my current health issues is not working. i think that i would rather hide my head in the sand and pretend all is well then to deal with it at times. but tis is not reality nor is it healthy. I am always able to preach to myself and i need to put it into practice.

Gardengirl, thanks for the link. I have raynauds syndrome. My children call my feet corpse feet as they are that cold and gray. i also deal with it in my hands. I run a low grade fever about 75% of the time. have widespread osteo with bone spurs. joint pain and fatigue. My primary is wanting to send me to a rhuematologist. again i am reluctant because not knowing at least in my brain is better then knowing. A big thing effecting me my doctors already believe systemically is post polio. I had polio from the vaccine as an infant and have nerve isssues with my legs showing up. prior to my stroke in 2001 i was in a afo for several years because i kept falling down. Through re-hab for my stroke i got rid of it as it at the time was the stronger side. That leg is about 30% smaller but i am glad to wear fun shoes again. YEA! Again i ramble.

Anyway, after the first and the testing i am going to be more proactive in better pain management.

Hey, it is Christmas tomorrow! Because that baby was born, i am able to go on each day with grace and mercy sufficient for that day.

DK

[BrokenBladder]

DK,

I really don't know anything about your condition but I wanted to let you know how sorry I am that you're going through this pain. I'm glad that you've decided to start posting in the CP forum because we do understand pain first and foremost.

Like you I have a couple of things that most people don't understand but it dosen't matter here. I've always gotten support and the best advice anyone could ask for.

I think you should see a rheumy even though I know how old it gets going to a new doctor. In my case it's my rheumy that finally got me some type of pain relief. As for your husband, I would suggest that he go to an appointment with you so that he can try to understand that sometimes there's a good reason to use narcotics. I know in my case I went a long time without them but I was miserable and it got to the point where I just couldn't do much of anything. I finally started the meds and at least I have a little bit of a life and some pain relief. I know your husband has good intentions but he needs to really understand that resting is NOT what you want. I would just tell him that you need some quality to your life and if that means taking narcotics then so be it. It won't change who you are but they may help you with your day to day living. If he's concerned about you being loopy or about addiction then he needs to read some of the posts on here about how CP affects all of us and how the meds might benefit you. If you do get loopy it wouldn't be for long, maybe 2 weeks, and there's never any guarantee's about addiction but he needs to understand how important it is for you to have some kind of a life. I will pray for you.............May God Bless!!

[gizmogirl]

dear dk.I am glad you will be more proactive on pain management. I couldn't agree more with what Lisa said, narcotics 'won't change who you are, but they may help you with your every day living'.
You are obviously a wonderful person who does for others you love a lot. Take care of your pain as aggressively as you would a child of your own. Then you can start the tiring process of weeding out other impediments to being the wonderful person you are.
My prayers are with you,
Jane

[Mark N]

DK, I have to agree with Lisa and Jane about their post to you. It is good to be more active on your pain treatment. I can tell you from experience that opiate pain meds have made me better not worse. Better pain control lets you live life better and I hope this next year lets you have better control over your pain.

[BrokenBladder]

DK,

Just wanted to check in with you and see how you're doing. I pray that you will get this under control sooner rather than later.

[dkdreamer1]

Thanks Lisa,

I had a nice Christmas with my children in NC. Two live there and one in Florida with us. We drove all night last night and i am back home.

My pain has been pretty out of control. With both my back and head csf in the forfront. My back is causing alot of nerve pain down my left leg. It actually renders me unable to move at night and i have to wake my hubby to roll me over. Thankfully he only wakes up saying he is tireder then usual. Not remembering why. i have an appt on the 7th for testing but am thinking of calling sooner and working toward better day to day management now as opposed to waiting. I am also suppose to go back into PT for my back as soon as my stomach heals. Hopefully in a few weeks.

Anyway i have been reading some recent threads where people talk about fleeing. I told my hubby that very thing a week or so ago. I said i wanted to go stay in a tent with a flashlight for a month. He jokingly replied that he didn't think that would work decause i wouldn't be able to get off the ground without calling him. I think that our fight or flight sytem goes into overdrive when pain is driving the bus.

Oh, i do have a beautiful new ring on my finger from my boyfriend of 30 years. 27 of which we have been married. I guess he loves me even though he misses alot of sleep.

DK