Doctors

[Brenda K]

Hi all. I am brand spanking new to this forum.
I am curious to know about people's experiences with their health care providers.
I was in a bad motorcycle accident in 2012. It was actually my surgeon who first suspected that I had developed FM.
I mentioned this to my regular Dr who didn't really seem to do or say anything about it. (After I was diagnosed..... I told her and she said, do you really want me to add another issue to your health file?). Wow...she is obviously a non believer. I was floored by this!

My neighbor has FM and I knew nothing about it other than pain and being tired, so I talked to her about it and she told me to go see her Dr.
I did and was diagnosed. My FM Dr has some pretty interesting theories and approaches to this disease and I would love to hear about other people and their experiences with their dr.
I always joke and say she is part Dr, part therapist with a bit of Witch Doctor sprinkled in for good measure lol.
She only sees FM patients and her appointments run 1.5-2hrs.

She believes that you have to deal with the mental and well as the physical. Fibro has truly become her passion in healthcare.

So my question is, how many other people have a FM dr like this?
This in a nutshell is what she has come to understand after years of treating this.

People who have FM are A type personalities.... which I am, or rather was until FM took my life over.
They tend to come from divorced or single parent families... My parents divorced.
They have suffered some kind of physical or mental trauma... For me, my accident.
They have what she refers to as the Trifecta lol.... Lactose intolerance, Fructose intolerance and Gluten intolerance.....I have all three.
We have trust issues, avoidant issues and tend to isolate ourselves (for good reason)...... this is me to a T. I talk to 2 people and that's pretty much it. My daughter and my best friend. Do I want to be this way? Hell no!
I used to be a go getter, a social butterfly, involved in everything to now going for weeks at a time without being in another persons presence. You can only cancel plans with people so many times before they just give up on you. I live in the country so that doesn't help. I have neighbors but never reach out as I have no life and nothing to contribute other than the ever consuming pain and emotional distress that this awful disease leaves me with. But I digress. Back to Drs.....

Here are some of the "witch doctor" approaches.

She did a "test" in regards to fructose, gluten and dairy. If you want to try this with someone, I would be so curious to hear the results and your thoughts.
Stand with your arm out to the side and get another person to push down on it, like how the dr does when they are checking for muscle weakness. They don't need to push super hard... you just need some resistance to push back against to try to not let your arm drop,,,,, Now do it again with an object... a remote, a ball, a book whatever. Again you should be able to resist your arm being pushed down.
Enter witch doctor: now, get some fruit or dairy or gluten and put it in that hand and have the person press down on your arm again. If you have an intolerance, your arm will push down easily even though you are trying to resist!

She also does hypnotism and teaches you how to do it yourself to use as a means to calm and relax you. I had an emotional reaction during the first time which she said a lot of her patients do. I am still learning the self hypnotism, but am getting there. Do any other Drs do this?
Ok, sorry this post is getting too long, so I will stop there. I would love to hear other people's experiences!

 

[Tipnatee N]

Considering you self truly lucky , cause that type of doctor are very very tough to find.

Everybody are different. I'm 70% B personality with sever FM CFS/ME , Non-24, and SPD ( sensory processing disorder) .

My parents weren't divorced , my mom passed away fron cancer, I'm the one that got divorced, then had a hospitalized trauma not by accident. all happening in the same year.

As far as the witch doctor goes, I am my own witch doctor and all the evidence are in my kitchen :mrgreen: At night you can find me grinding away numbimg herbal , spice oil , and packing my own turmeric pills. I might even considering extracting my own lidocain concentrate from cheaper products in the market. LOL :lol: :twisted:

 

[vickythecat]

You are really very lucky to have found a doctor who takes fibro seriously. And that she looks at it from different perspectives, looks at the whole picture of being a human (not just the 'symptoms', we are so much more than our symptoms!) and that she takes the time with every patient of hers.

I wish I had found a doctor like that. The 'good' doctors I have been to, well, they did diagnose me with fibro and being in my mid 30's, mid-career, in a country where women are expected to be married with kids at my age, they took my problems seriously. (sad, I know, because being married and having kids has never been a priority in my life!) But sadly almost all of their solutions were medication and a lifetime of physical therapy that simply existed of TENS machines (they do nothing for me), hot packs (magic) and exercises (great if you can do it, it really is essential in life).

With me, my fibro was there more or less from the start. Born from a difficult pregnancy, difficult birth, extremely sensitive my all life (sensory and emotionally), have this strong feeling of morality so unfairness always really got me, a lot of things give me nightmares, so have suffered from sleepless nights even as a small child, a number of physical and mental trauma's throughout my life. I have no allergies or any food intolerance, though.

Everyone's story is different, but it is really crucial that we all focus on our mental well being, living with very physically debilitating illness affects our whole being.

Good luck with your doctor, you seem to be in good hands, so I really hope you feel better real soon, and stay that way

 

[Tipnatee N]

OMG Thank god you don't have allergies Vickythecat .

You already suffer far more than enough it's a huge blessing that you don't have to deal with it. Cause allergies+fibro is a whole different kind of tortures. and allergies+anxiety .. wow! it's really hard to act like a human being.

I'm 37 and I'm divorced lol no kid. I guess I cound't have any any longer now. Tens machine hurt than help. But self body adjustment like cracking or binding techniques is something that I'm getting better at it and it does sometime save me times and pains when needed.

 

[Brenda K]

Tipnatee N

Hi. Tipnatee N. nice to meet you . As regards to divorce, I misspoke. Sorry, I was having a hard time putting together what I wanted to say, Anyhow, my Dr said in her years of doing this that people either came from a divorced home or got divorced themselves.
There's more but I just can't think of it all right now.
I am really lucky to have found her, the only downside is she is gone now for the winter (can't blame her, they are brutal) and I find myself in one of the worst flares at the moment.
do you find that the herbal supplements help?
I use s Tens machine and find it helps with the stiff and some soreness, but it doesn't last long so when it's r ally bad, I pretty much have it on all day.
I mostly use heat to help get me through.

 

[Brenda K]

Vickythecat
Nice to meet you! And thank you for sharing.
I use the Tens machine too. And I love my heat. I sit in front of my space heater a lot, I find my body has to be kept very warm to be able to keep moving. As soon as I get cold I literally cease up. I am not looking forward to winter, I am already having issues with the temps now and it I still nowhere near as cold as it is going to be.
I am a getting the feeling my FM Dr is One in a million. I still can't believe my own dr who I have gone to since I was a teen didn't even want to add it To my chart.
How does anyone get anywhere with this disease when medical professionals are still skeptical that it Is still even real?
What do you that gets you through the worst days?
So you ever get to that point where you just don't know how much longer you can keep doing this?
I was doing pretty good till last November I had to have my gallbladder out, I ended up getting Clostridium difficile infection from the surgery. It took 3 courses of really strong antibiotics to get rid of it. This left me with no good Bacteria in my stomach and for the next 6 months I was queasy and felt ill all the time. It basically put me into a long awful flare. I haven't felt right since although July and August were manageable, but I just had knee surgery the end of August and it again made me really sick.
I have only been dealing with this for 4 years. You have basically had it all your life! I can't even imagine! How do you do it? How do you keep going like this?

 

[Brenda K]

Tipnatee N

I also do the self cracking. My whole body cracks now. My neck and shoulders are by far the worst.
May I ask what binding is? Dow it work? Love to know more. I am one of those I will try anything once type of people lol. It's more just desperation to find something that works.

 

[vickythecat]

Vickythecat
Nice to meet you!
How does anyone get anywhere with this disease when medical professionals are still skeptical that it Is still even real?
What do you that gets you through the worst days?
So you ever get to that point where you just don't know how much longer you can keep doing this?
You have basically had it all your life! I can't even imagine! How do you do it? How do you keep going like this?

Nice to meet you too. And a belated welcome to the forum!

The medical professionals, well the ones that are skeptical, they are not even worth our time or any place on this forum. If you happen to meet one, just move on. I used to really think doctors were all truly smart, educated, experienced, wanting-to-learn/improve individuals. Sadly, they are not all like that.

But once you do find someone who does (semi) understand how life with fibro can real hell, sadly most of these doctors only focus on medicating the problems. And as you will read quite often all over the place, finding the right medication or even a medication can take years. So you have to learn to be smart, learn your body, its limits, what it like, dislikes etc.

To get through the worst days....acceptance. I used to cry a lot, but then I'd get these horrible headaches, so I now know not to cry, not to feel pity, not to fight it or dwell on it, simply sad 'this sucks, but it is what it is, I will take it easy'. I try not to stay in bed all day, I do try to do basic stuff, at least listen to some nice music, find distractions (puzzles, tv, having the cats warm me!).

For me, pain is such a normal state. I don't remember a life without pain. It is sad when I think about it, but it is quite fascinating what a body/mind can take, and how it gets used to things.

I don't have a social life, I don't have any friends, no relationships, no kids, no boyfriends/intimacy for years, no home of my own, no car, no driver's licence, I rarely get out of the house...listing all of these make me look like a 'pathetic' being for the outside world, but believe me, finding happiness in small things becomes your expertise when your body is in pain all day. I actually think I am happier than most people out there most of the time. I see the sunshine, I truly enjoy it. I see it is raining, I enjoy my blanket/cup of tea more than ever. Or pain-free moment/hour....just wow....how I can go and clean a room and be truly proud of myself...

Healthy people take so much for granted. Illness shows you what is really important in life. So as much as you can, try not to focus on the pain, the fatigue, the brain fog, but focus on what you can do.

 

[vickythecat]

OMG Thank god you don't have allergies Vickythecat .

You already suffer far more than enough it's a huge blessing that you don't have to deal with it. Cause allergies+fibro is a whole different kind of tortures.

I truly realize how lucky I am that I don't have to deal with allergies. I am so so so thankful.

Funny thing is that my generation, born in this developing country, does not suffer from any allergies but have had to deal with almost-terminal situations and illnesses quite often!. I almost died when my mom was giving birth to me because it was a very primitive hospital. They didn't even have an xray machine or ultrasound, nothing. We'd have days without running water and/or electricity, food only came from farms close to where you lived, we only ate fruits/veg that were in season, not much meat, lots of legumes, streets/hospitals/schools were all dirty etc. But maybe because everything was so primitive, we didn't get all the meds, shots, hormones/pesticides in food. Scientists here seemed to have noticed it as well.

Living with allergies, on top of everything must be truly hell. I wish you all the best with your allergies. I hope nature brings you the cures you need

 

[Tipnatee N]

Branda K

Every witch doctor knows there's no one trick to cure anything. But lidocain is very safe to go nuts over it lol

I often add turmeric in my food , and love dead sea salt bath . I take my deficiency problem very seriously. But on the heavy humid days are still hellish regardless. With bad acid I often use lots of baking soda as bathing, brushing my teeth with it to stop my teeth from crumbling out more , or drink some to keep up my alkaline to reduce acid.

There are many nerve oils that I like such a peppermint , cloves, eucalyptus, and lemongrass oil..they're simi help some nerve pains and with no sense of smell as much any more for me I can still smell some of them which make me feel more like a human being. When things got bad if use very early it can save you times of spending with later pains from anxiety. I just ordered kratom, coca leaf supplement , and cbd oil . which should be here next week I hope . I can't deal with the high sensation and for a very long time scare of cbd oil cause hemp and I don't usually get along do to some minor childhood trauma causing IBS and acid related.

 

[Tipnatee N]

Dear Vicky

I was born late and lost oxygen I almost die and my heart was completely stopped. But I was revived and in incubator for a few months after before I could go home .

I also was born a BLUE BABY! :mrgreen: . Seriously! it was like the blue frog with greenish tone colors covered all over my back and under my chest as the birthmark Thank god it was not on my face or anywhere outside the clothing coverage . ( It's the birth defect call Mongolian spots ) It stayed through all my childhood and very slowly fading away till I've gotten older around 14 years old that's when it was finally gone completely. My bad circulation was born from birth. The first time I had a very high fever 104f when I was 4 years old , my mom made a mistake tried to warm me up with blanket trying to make me sweat. I almost die (again) . As soon as I got to the hospital the doctors and nursed just tossed me in to the ice bucket and I'm back good as new quicker than most people :shock: Since then ice was my friend. But because of that Bruxism came naturally.

I never have allergies growing up , till I moved to US,Texas in the late 90's.. it just hit me out of nowhere along with sinusitis / chronic head cold symptoms / TMJ. I wish I didn't moved there but 3 years that I was there I thought my allergies was the worst thing in my life. Well I cound't be more wrong. But It's still the worst thing with fibro / anxiety for me cause it drove me insane everytime it hit.