One of the keys to any illness is finding and keeping the right Doctor. If ever you feel that a Doctor is not listening to you, not taking you seriously, not able to diagnose you in a reasonable amount of time, and not prescribing meds that help you, please keep looking. Don't settle for someone who just isn't the right one. Realize a specialist, like a Rheumotologist or Neurologist may be able to better diagnose and treat you.
Do all you can to assist, keep a running list of symptoms, or a journal. Research and keep a list of questions, keep you eye out for new meds. Sometimes just asking a current Dr if they can take better care of you, may result in better care!
Im in that boat of finding the right one. I did go to a rheumotologist and after the appointment, where i got diagnosed and perscribed an abnormal medecine schedule, they have been no help they just have me come in and pay them for them to ask how im doing then say well try not to take your medications (lyrica and xanax) everyday try to adapt then they send me on my way till the next appt. Needless to say i have stopped going to that doctor. I have been trying to become more educated on everything so when I do go in to a new doctor they can't just blow smoke up my butt. I advise that people shouldn't settle like you say and i have also read to keep a food journal to help figure out foods that may trigger flare ups and to also listen to your body don't just think you're crazy when you have random other symptoms. I recently started getting restless leg and my doctor just shrugged it off like i didn't say anything. Hope no one goes through what some of us do with the nonhelpful antics of doctors. Best of luck everyone.
That is just how you need to feel right now, determined! I am so surprised that they do not try you on Lyrica. I use Champ VA and it is available through them, although not everyone can tolerate it, I could not tolerate the Gabapentin. The Lyrica not only helps the Sciatica, but also nerve pain from exposed nerves in teeth.
I am very glad that you will soon have the priviledge of choosing your own Physician, we who have that opportunity don't always realize how fortunate we are that we can choose. That said, insurances are getting so incompatible with Doctors and hospitals who will accept it. There are many I know needing surgery, if they find a hospital to take the insurance, then no surgeons affiliated with the hospital will accept it. Talk about being stuck between a rock and a rock!
Hope you are soon on the mend! Always good to hear from you!
SK, thank you for this post. It can be VERY discouraging to try to find a good doc and it is easy to give up. When I went to the neurologist in Atlanta in August, he told me that I have Conversion Disorder and that all my symptoms were caused by it. Conversion Disorder is basically where you have some unresolved psychological issues that are manifested in physical symptoms. This doctor did do a thorough exam and looked at all my records that I brought, even took the time to look at all the MRIs and other tests I had done. He then explained that there was nothing wrong with me and I needed,to go to a therapist and had some really good crying, screaming sessions to get it all out and then I would be better. I asked him specifically about the difficulty I was having swallowing and he said that was part of it. When we left his office, I was beyond furious. I told my husband we were going to check out of the hotel and go home. I was tired of all the asshole doctors and BS. He said we should stay as I had an endoscopy scheduled for that afternoon and that we could go eat somewhere nice afterwards and then leave in the morning. Since he was driving (I couldn’t due to dizziness, numbness) I didn’t have much of a choice. They found the tumor when they did the endoscopy and the rest is history. I tell this story to show others that you have to be assertive and persistent when dealing with doctors and your health. Had my anger gotten in the way of searching for answers, Iwho knows where I would be right now. I am glad cooler heads prevailed. So please, please, everyone, keep searching for that right doc. That sometimes mean traveling for those of us who live in a small town but our health is worth it! I realize that travel can be a burden on some but if you find the right specialist who diagnoses you, they should be able to coordinate care with your family doc so you would not have to go to the specialist that many times. And I know that insurance is an issue with some. You can google the docs on your list and find reviews and such to start your search for a good doc. You can make an initial appt and interview the docs before using them. I have done that in the past. You can ask around for people who have used that doc and get others opinions. (If you are in a small town). There are many different ways to get info. I am rambling and I am sorry- I will attribute it to lack of sleep. Go out there and fight for yourself!
Lisa, isnt that awesome? At my old house, I would sit on the porch and read or have a drink and just chill. The squirrels would come up to me and I would feed them pecans. If I didn’t have any they would fuss at me. They eventually became so tame that they would eat out of my hand. And if I didn’t have pecans or some other treat, they would put their paws on my leg and look up at me like, where’s my stuff? So cool.
I totally agree. Keep looking for the right doctor, one who listens to you. I do a lot of research & share articles with my doc to see if he thinks it would help me. Certain docs welcome this, others not too much. After all, they are the specialist, not you, so they may not like that you are questioning their abilities. I am going to a chronic pain doc as my reumotologist could not help me anymore. This chronic pain doc has tried 2 different protocols with me so far but neither has worked. I keep asking myself what the heck is going on with my body that nothing works!! Next week I will see what his next plan if action for me is. Believe me if it whatever it is works I will share it with u all. After all that is what we want relief from this horrible chronic pain & share it with everyone so we can get on with our lives!!
We also live in the land of chipmunks, groundhogs, raccoons, squirrels, I always liked the squirrels too, until they got in my husbands nearly new truck, under the hood and chewed through all of the electrical wiring. Now with all of the nut trees in our yard, mainly walnuts, you would think they would enjoy them instead. Must have wanted something different!
I also have to give praise to my Chiropractor, he has been with me since before this really HIT me, and has kept me on my feet, and out of a wheelchair. That chair is in my future, no sense in me denying it, but I am going to do my very best to stay on my feet! He insists I have myofacial pain syndrome rather than fibro, they read almost exactly the same, so no sense splitting hairs there!
Here I go again with the EDS info. I know I'm a broken record but this reminds me of something. I haven't mentioned that a high narrow palate and problems with teeth and gums can be symptoms of Ehlers Danlos. I take Gabapentin also and it does help. I was just given prescription strength Naproxen for break through pain too and it seems to be helping. Sciatica is also on the symptom list. If anyone has problems with the SI joint, that is a symptom also. I'm not saying that anybody here has EDS. I'm not a doctor. But I have it and so many with fibro have it and don't know. It's hard to know when doctors don't study EDS in medical school and it's not mentioned in the media much if at all. I just signed a petition that is aimed at getting more EDS awareness out there. I hope everyone has a good Wednesday.
Whoa Susan! This all sounds so familiar to me, Renie asked me about this when I mentioned that the Dentist and Pain Management Drs could never get me numb.
Guess I'll be having this talk along with the Scleroderma, I have so many major symptoms of both. Oh my I don't need anything else!!! Scleroderma was suspected by my Internist right away, but never EDS.
By the time I got to my current Rheumatologist, I was a wreck, just sobbed, so he is careful not to give me too much info at one time, even though now the tears only come when he touches me! Oh, what a life! I do not have hypermobility or skin with that much elasticity, but so very many of those symptoms, but most attributied to something else.
Susan, not sure if this would be the medical definiton you would prefer, but thought I would add it for others. Hope that you are well, always a pleasure to hear from you!
I actually found my Rheumatologist in a very small town, but this tiny hospital is in the process of becoming a teaching hospital, my Rheum is an Asst Prof at the state university, so I feel very fortunate, even though I need to travel, and riding in the car is torture!
I am so on board with this, for I am in the midst of shopping for a whole new team of doctors. By January I'm trying a new primary care doc, and a new rheumatologist. I think I also need to find a therapist.
Good to hear from you, girl! I think of you everytime I see a beautiful photo of Kaneohe! Always said if I go back, it will be a one way ticket, hard to leave my son and grandkids, you know, so unless I can bring them, I'll stay landlocked!
I am fortunate, all of my Drs are very patient with me, I explained to them early on that I was just the type of person who 'had to know'! Some do not, they just want the pill, where I have to 'understand', so I search, and ask, very carefully, of course.
I am ever hopeful that you will find 'your Doctor' and be able to get some well deserved relief!
My neuro has told me he has done all he can do now; however, he knows I go to the pain clinic for my fibro. He treats a lot of other ailments I have. He has me on the best fibro meds to date. I am allergic to Lyrica. My last internist didn’t believe in fibro diagnosis.