So tired of doctors who blow you off

UGH! I got my test results from another doctor. A Neurologist. They did blood work and xrays of my spine. They said all my blood looked fine except I have low vitamin D. Wow, I live in the northwest...go figure!

They said the x-rays looked like my back was perfectly normal. Ummm, I was in 5 car accidents. Two severe ones, one where I had to have shoulder surgery and every other xray I saw of my spine I could see it was messed up. Even an Orthopedic saw arthritis in my spine. Where as this Dr found nothing.

They told me to keep taking Gabipentin and if it flares up, take tylenol and advil. I just broke down. I am tired of doctors treating me like I don't have pain and they don't understand why I would have this much pain. My husband can't give me back massages, or neck massages. Just two nights ago he rubbed my leg and I screamed out in pain because it hurt to touch my skin. I have barely slept in 4 days. Not even Ambien is helping :(

I'm ready to give up. Nobody will give me anything to help on bad days when I can't sleep from the pain I'm in. How hard is it to get a medical marijuana card? I don't do pot, but, I'm desperate :( I just want to be pain free

Dear Trix,

I am so sorry that you have to repeatedly go through this, it is beyond belief!

Have you gone to a Rheumatologist or Chiropractor yet? My GP is my rock, but he insists that I also go to a Rheumatolotist, and I finally do have a good one. Those three have saved my sanity and my life.

Are you near a University hospital or a Mayo Clinic? I'll need to go to your profile and get back to you in a moment.

http://www2.kumc.edu/internalmedicine/rheumatology/facultystaff.html Here is a link to several Rheumatologist who are connected with your University hospital in Seattle.

I went to a neurologist, the only thing I got out of it was finding I had mild Carpal Tunnel, and that no nerves or muscles were damaged or diseased, and I was amazed that this severe Sciatica did not show up, second time for those, did not show either time!

The Neurologist was gradually taking me off all meds, saying that my problem was that I was 'stiff' that was his conclusion!! My GP and DC are deeply religious men and when I told them his findings, after they picked their teeth off the floor said "BS"! So then it was the process of getting in to the next Rheumatologist. He diagnosed me with 3 autoimmune diseases and Fibro first visit.

So, it really is all about finding the right one! And telling them that you not only want to treat the pain, that you want to find the source of the pain and get well and stay well. There are so many who just want the pain pills!

I hope that this info will help you and I will also look for a fibro clinic near Seattle. I lived there for a year, down by Seatac Airport. The weather surely isn't doing you any favors.

http://www.fibromyalgiaseattle.com/ This may also be promising.

I hope this helps, I will help you in any way I can, please stay in touch and don't give up!

Hugs,

SK

thanks so much!! I ask the doctor today if I need to see a Rheumatologist and she said no. I was looking at that site earlier today :)


thanks for your support and input.

Trish

She doesn't want to lose a patient, but it sounds as though she is NOT helping you, not indepth and completely.

A good Internist as a General Practitioner is always a plus, you will need a GP no matter what, but I think all Rheumatologists are also Internists. I would think that a good Rheumatologist is best to rule out any autoimmune disease, and most are very well qualified to deal with Fibro.

Again, I am not a Doctor, but I am trying to help you get where you need to go as far as a Doctor. The Neurologist has started the testing, and is ruling things out on her end, but because you are still suffering so, she is just not cutting it. The Neuro was not cutting it for me either!

thanks! I have no clue where to go.


I'll try that route :)

I have nothing left to lose!

Trix, this sure sounds like what I've gone thru with my back/SI joint. I had a minor bulging disc, which the doctors assured me wasn't causing the awful pain I was in. Like you, I'd leave each doctor's office in tears of anger and frustration.

Recently I was recommended to a pain clinic. The doctor there saw I had arthritis of the spine and he felt that the arthritis was actually causing the terrible pain and radiating down to the SI joint (hip area.) He then suggested having the nerves cauterized so I wouldn't feel the arthritis pain anymore. I was skeptical but figured "oh, what the hell." Mind you, I've already been thru the route of shots to the spine/SI joint and they did nothing. So this was the next step.

Well, I did go thru 3 weeks of pure hell after the procedure but now I do see an improvement. Other parts of my back still do hurt but the worst pain is gone - for now. It will return when the nerves grow back, unfortunately, which could be anywhere between 6 months to 3 years. But at least it's a reprieve from the pain.

So my suggestion would be to go to a good pain clinic and see if they can do more for you. Arthritis to the spine can be crippling, and mine was supposedly "normal wear and tear" (yeah, right.)

I hope this helps you out some. I know how perfectly dreadful the pain in your back is and I fully sympathize.

PS: I fully support SK's advice to you, too, btw. She really knows her stuff and has been through it. And she's right, you do need supportive doctors, not ones who blow you off.

I don’t have any great advice like the other ladies here, but I went to a nurologist and he said my cure was a theirpist. So yeah some doctors are a waiste of perfectly good oxygen. Just try to keep in mind that they “practice” medicine or they don’t know as much as they think they know.

Oh, Trix, I am sorry you are going through this. I was doing some paperwork the other day and I have seen 21 doctors this year alone and have been given about 10 different diagnoses.it really sucks and all I can say is keep trying to find a good doc because there are a few out there. SK has incredible resources so I would follow her advice. I hope you find some relief.

Trix, please listen to SK ! Anyone that says take Tylenol & Advil for a flare up is out of there mind ! They either don’t believe you or they have no clue what pain is !!! I had surgery yesterday ( D& C & uterine ablation) it burns out your entire uterine lining , very painful , but let me tell you, my fibro pain was miserable because I couldn’t take my savella, or my tramadol, nothing, I suffered all day till 4 pm, before surgery I told the anesthesiologist my whole body hurt, he started by giving me fentanyl & another cocktail of drugs, first time I woke up in 2 years with no fibro pain , in recovery they gave me 2 more doses of fentanyl and I also had an entire bottle of Iv liquid Tylenol , guess what my pelvis was on fire, cramps like child birth, but the fibro pain gone, my mother was amazed, that I was sitting up smiling waving at her, all that they gave me did not help the pelvic pain, but the fibro pain was gone. Wow it was so great ! Of course we can’t go through surgery to get relief, nor can we become dependent on strong narcotics, but for me it confirms how bad my pain is , and how exhausting it is to deal with it on a daily basis. It is real ! I wish there was a fibro clinic, that we can check in for a weekend and spend a few days free of pain. My pain is back today, but I feel rejuvenated to have had just had a few hrs of no pain … Don’t give up ! Do you have anything for anxiety, lorazepam with ambien, sleepy time tea is my sleep secret !

Dee, I am glad you got some relief even if just for a short time. I am having surgery in a couple of weeks and have been joking (but really half serious) that I can’t wait to get some good painkillers. It’s criminal that we can’t get any relief from this fibro pain.

Dee,

Wow, that sure is powerful proof of how bad your pain is, Dee. It's moved me to tears,thinking of you in that kind of pain and having to deal with it. And then there are idiot doctors telling others to just take Tylenol and Advil for the pain? (Ok, well Advil truly does help me with pain but it also blew my stomach out.)

I'm glad your surgery is over and you're past that particular female problem, since, as you say, it was also impacting your fibro. Or rather, the fibro was impacting the female problem.

What's weird to me is why some people have much worse pain with fibro than others? Except for my SI joint, my fibro pain isn't hideous, usually. It makes me wonder what there is about the disease that hits some much worse than others. Do some get more pain signals sent than others? I know there's no known answer but it puzzles me as to why the same illness strikes some so much harder than others. It doesn't seem fair.

I cant sleep either but last nite I tried this herb called snooze in with melatonin. It worked so far

Our good wishes and prayers are with you Dee that your recovery will be quick and complete, and that the surgery will correct the problem.

MB good wishes and prayers that your surgery will be successful and the pathology on this will be clean. Keep us updated, please!

Hugs,

SK

Thanks, SK, I will. I had all the tests this past week and should get my surgery date tomorrow. It’s a shame that I am looking forward (sort of ) to surgery but I am hoping in the long run, it will give me some relief.

glad you are ok Dee. I dont even know of a doctor to give me anything for the pain. Im going to get an appointment with a pain specialist and see what they say.

Good to hear that you did so well with your surgery. Those breaks from pain are amazing. I guess we all forget what it's like to "not" feel pain all the time. My prayers are with you for a full recovery.

Hugs,

Allergic

i use melatonin....it helps a tiny bit. but then i'm up again. :(

Thinking of you this evening Trix, hoping you soon find some genuine relief!

Hugs,

SK

thanks. :) I have a sleep appt on wednesday. I am still doing research on pain clinic's