Hi I can understand your frustration, it sounds like, with doctors and not seeing them anymore. I have been there and I'm currently there now. And I can say doctors really haven't done much for me.

Thanks Lilly,

I am trying to find a way to heal myself.

Yes, but not completely. One needs more than medicine.

I think it depends a lot on what type of illness, disease or conditions you have and how treatable they are. Some things get to a point and there just isn't much Dr.'s can do any more, where others are more treatable and can be managed, so the Dr.'s have to stay in the picture.

Even though I stopped all my narcotic meds, as of 2 months ago, I still have to see my PCP and 4 Specialists every month to 3 months because now the Pain has to be managed with other different types of treatment.

So Dr.'s, tests, etc. are never far out of my daily routine....

I am soooo impressed that you have stayed off all your narcotics! That is amazing. How do you feel? A whole lot better I hope. I am also glad to hear that your doctors are addressing your pain in other ways for you. If I remember, you are held together with tape and staples (kidding) so you can use all the help you can get :)
I do go to doctors from time to time and then take a break. When it comes to my back, which is at the root of a lot of my pain, several specialists say it is inoperable to quote one surgeon "I wouldn't touch your back with for all the money in the world" so either I haven't found the right doctors or there is truly not a lot you can do for me. Physical therapy and rest do wonders and I am working on trying to make room in my schedule for more self-care. xo Thanks.

Did you try inversion therapy?

LOL..yes I am held together with lots of duct tape!

Ummm it's weird because in many ways I feel much better, as a whole. Certain systems are better, Gastric, Renal, Neuro are better. Some have had trouble adjusting, mainly Lungs, Cardiac and Blood. I have a Factor 3 Clotting Disorder...in a normal body, 10 years of LA Narcotics/SA Narcotics shouldn't have bothered that. My platelets and white blood cells are all over the map and its been challenging for my Docs as to why. Those systems are slowly settling in to the new body chemistry. LOL My body is just crap and it does not like change!

About a month after all narcotics were out of my system my brain/pain receptors reset to a "real pain" level and it was lower than what my brain thought it was. It runs between a 3 to an 8, depending on how much I overdo it. It used to be a constant 5 and peak to 10+.

I manage the pain with Protein Rich Plasma Therapy, and Physical Therapy once a week, Pool Therapy every day, Corticosteroid injections in knees, hands, elbows and shoulders every 3 - 6 months as needed, Acupuncture once a month, Tens Unit and Heat. I still use muscle relaxers, anti-inflammatory's, Voltaren Gel, and Arthritis Meds.

So, yeah I don't really miss the Narcotics and the hassle of them. It wasn't torture going off them, I did a very slow, controlled taper over the course of 3 months and never had to deal with terrible withdrawals or any of that crap. Overall I feel "healthier" without the narcotics in my body and I was never one who relied only on narcotics to manage my pain, I've always advocated for multiple modalities of therapies to manage pain.

I have surgeries in my future that I'll have to deal with, but those can wait a while, I'm not in a hurry for any of that.

I"m glad you're taking care of yourself and finding ways to lessen your back pain.

Take care.

Wow, you sound great...I mean...not all the health challenges that you have to manage (what a hand you were dealt huh?) but emotionally you sound really good. And the therapies you are doing, fantastic. Can I ask about one thing? What it V0ltaren Gel? I haven't heard of that and I would love your take on it rather than to just google's. You are a wealth of knowledge and I guess you have had to be. That is a lot of juggling to function but if it works it is worth it right? What are the surgeries you are looking down the barrel of if you don't mind me asking?
I use muscle relaxants and an anti-inflammatory too. I am resisting steroid shots for now but I know some people get real relief from them. Because a lot of my pain originates from my back, and it took them 5 tries to get my spinal right when I had my son, I am kind of scared at the thought of them sticking more needles in my already precarious spinal column. One false move...well I am not ready for a wheelchair just yet and my legs only want to work some days as it is. My mom has terrible stenosis which led to an eventual drop foot after surgery for her hip and it was a life changer for her. 80 years old and she went from doing everything for herself, had it together more than I do, to using a walker and just feeling like her life is over. So sad. Her mom was going strong until 100 so I think she pictured the same thing for herself.
Anyway...glad to hear you are not using those narcotics, they are great for post-op or emergency situations but long-term...I had to force my mom to do detox in a psych unit to get off them but she is thankful that I did.
OK, take care of yourself...that is the trick right? xo

Voltaren Gel is an RX topical that has Diclofenac, which is an non-steroid anti-inflammatory, in it. Since its a gel, it has isopropyl alcohol in it that makes it absorb quickly and it works fast. I've used it for probably 11 or so years and will always unless they come out with something better.

Future surgeries for me will be Left & Right knee replacements, Left Shoulder for a Rotator Cuff issue and torn cartilage removal, Left hand Carpal Tunnel surgery and Right Hand fingers and thumb for Arthritis related joint capsule issues and boney growth shaving/removal. So, yeah nothing I'm really in a hurry to jump into until they get to a point where I can't manage the pain in other ways. With my Blood Clotting Disorder, surgeries are never easy, its always a stay in the hospital and there are always complications...so we don't do them anymore unless we have to.

I get the steroid injections in my joints due to the lack of cartilage that I have, they work pretty well for me. There is a limit as to how many you can get each year, and my Ortho Surgeon works out that schedule for all the joints and we go by that. Swimming helps alot in being able to keep my joints mobile, with 0 weight on them.

Hang in there!

Usually doctors will not do much. Unless the pain is severe. When the pain gets to where it severely limits function. Or the patient can no longer handle it with low dose opiates. They operate,.

I have 2 pain management doctors - I prescribes meds, another does injections. I also see a therapist for anxiety control and several specialists for my other medical issues.
Only because I have this team of doctors, I was able to return to full time employment and even went back to college to advance my degree.
I am very lucky.

You just described everything I'm dealing with. My spine specialist just told me there's nothing more he can do for me until I lose weight. And since we all know that's easier said than done, I've basically been given a life sentence of chronic pain. I refuse to take drugs to mask the pain. Daily living is becoming increasingly difficult. How do you all cope?

Losing weight really will lower your pain level. Have you considered seeing a Pain Management doctor ? If/when you get to the point you cannot shower, fix yourself something to eat, get dressed, sleep etc due to severe chronic pain. You will change your attitude about medications to help manage the pain. I do not mean occasionally. I mean all day, day after day, week after week, etc. No one likes taking pain medications. But when combined with other pain management methods. Medications can be a blessing.

I know people don't like it when their Dr's tell them to lose weight, but it's a researched and proven fact that excess body weight causes a whole litany of medical issues. And if you have back/neck/joint issues and pain the extra weight makes them much worse.

It is difficult to lose weight, it takes retraining your whole outlook on diet, creating healthy new eating habits and exercising daily. Seeing a nutritionist, which most Insurances cover, can help you get on a healthy, calorie correct diet. So that all your putting in your body is fuel, not junk. Exercises like Pool Therapy, where you exercise in a pool, so that it creates 0% weight or pressure on your injured area's is excellent exercise.....and exercising in a weightless environment like a pool, rarely causes pain.

Overeating/Unhealthy eating + lack of mobility/no exercise = increased weight = pain

Its a cycle and you have to break that cycle to get better, because your Dr. is right there is only so much they can do for you if your overweight. If you start focusing on your body as a whole and treat the whole body, by getting to a healthy weight, then you can reduce your pain. And you can manage pain without Narcotics/Opioids.

Take care,
Kat

OH Kat you are so right and I know it all to be true but when the blues hit I do not want a salad :) I want comfort food and the shit has been hitting the fan around here lately and that has made it all the more difficult. I lost 20 pounds recently so was really on the right track so it is just a matter of recommitting to making good choices. Not always an easy thing to do when you have an eating disorder BUT that is not an excuse. Today is a new day and I will eat healthy today thanks to Kat's inspiration, one day at a time right???

How are you doing honey? The duct tape holding up alright??? :) xoxo Kari