Just talking something out

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deme
Regular Member


Date Joined Oct 2009
Total Posts : 27
   Posted 1/12/2010 9:25 AM (GMT -7)   
This might be long and rambling feel free to skip the read I just need to talk something out and couldnt think of anywhere else to do it.
 
Went to see my rhuemy today and he's sending me to a neurologist and a GI Dr. for a full evaluation. I've been needing to see a neurologist and keep putting it off. I keep putting off because I have an unreasonable fear of them. I'm not a particularly fearful person, I can count on one hand the things in life that scare me and none of them involve an unreasonable amount of fear.
 
I even know why they scare me. I had migraines and was put on various medications and the medications were making the migraines worse. The first med they put me on I got migraines where the pain was so bad that literally that is all that existed there wasnt even a me anymore. As if that werent bad enough I'd have outer body experiences with it. I dont believe in outer body experiences and always put this down as a dream or a way of the mind escaping. But it happened multiple times. I'd be floating above myself peaceful happy with no thoughts or memories I'd notice a person below me and would float down and as I'd approach I'd realize they were hurt something was wrong and I'd move down faster. Finally I would get close enough that I'd touch the instant that I did I'd realize that it was me and all that pain hit me at once and I'd pass out. Not wanting people to think I was crazy I never mentioned  this to anyone I'd just say the pain was so bad I'd pass out and leave it at that. But it scared me really bad.
 
 about 6 months after no longer taking that drug my migraine pain was never that intense. I saw other neurologist and had other drugs that had pretty bizzarre side effects and finally I just quit going altogether.  Since then I've always had some fear of Dr's in general but Neurologist I have to force myself to go see. Logic tells me that if I go see the neurologist and he gives me a drug I dont have to take it and I've learned to pay attention to side effects and if I get a bad side effect or worsening of condition I can quit taking it. But all that logic does not make me any less afraid to go see a neurologist. I know he's just a Dr. I need an evaluation, there's nothing he's gonna do that's going to harm me, but deep down all that logic is not making me any less fearful.
 
I thought maybe if I wrote it out so someone might see it maybe admitting to it might make it less fearful. I'm hoping admittance of a problem is often the first step kind of thing. I know people scared of snakes, spiders, even cats, but a Neurologist? I feel like face palming just writing it down. But I drove home crying just thinking of having to go see one. Now after writing it I feel  torn whether to post or hit delete.  I'm not usually an anxious person but I always get very anxious before and after Dr's visits and I just got back so exuse me if this is not the correct sort of thing to post about or for rambling.

Myself 09
Veteran Member


Date Joined Dec 2009
Total Posts : 5878
   Posted 1/12/2010 9:43 AM (GMT -7)   
There is nothing to fear but fear itself.

Truer words were never typed.

also, one thing I often do to help myself deal with anxiety/fears (both rational and irrational) is put it to the "test': Can I do anything about it right now? If I cannot, I put it out of my mind until later, and do not allow myself to dwell on the possibility.

It sounds like you need a mental purging ceremony. sounds goofy, but it works for me. Throw away those thoughts, because they are taking up time and energy you do not have. They are doing no good, they are not useful, and are, in fact, doing a lot of evil.
Fibromyalgia DX 2005. Ulcerative Colitis, arthritis, TMJ. Family History of Fibro--2 out of 3 siblings diagnosed.

There are three kinds of people in the world: ones who see the glass as half-full, ones who see the glass as half-empty, and others who see a big crack in the side which is leaking all over their %$#@# foot.


deme
Regular Member


Date Joined Oct 2009
Total Posts : 27
   Posted 1/12/2010 10:04 AM (GMT -7)   
I really wanna purge, purging sounds good. I tried puttin it out of my mind and ignoring it but it comes back before and after Dr's visits. I thought if I put it out there in black and white and admitted it it might help. I actually felt like an idiot when I hit the submit button but afterwards I actually felt a lot better like I'd accomplished something. Sounds weird I supose but writing has always helped me and the act of posting was like admitting it outloud and a relief somehow.

Myself 09
Veteran Member


Date Joined Dec 2009
Total Posts : 5878
   Posted 1/12/2010 10:06 AM (GMT -7)   
-thumbs up-

I have a little ritual, where I touch my eyes and 'imagine' putting this silly stuff in my hands, and then I mime throwing it on the floor.

It takes mental backbone and resilience to leave it there. But that is where it belongs.
Fibromyalgia DX 2005. Ulcerative Colitis, arthritis, TMJ. Family History of Fibro--2 out of 3 siblings diagnosed.

There are three kinds of people in the world: ones who see the glass as half-full, ones who see the glass as half-empty, and others who see a big crack in the side which is leaking all over their %$#@# foot.


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 1/12/2010 10:25 AM (GMT -7)   
deme, You have taken a huge first step. Admitting your fear and talking about it will help
you. You know where your fear stems from. When you meet your new neurologist tell him
everything. He will hear your concerns and provide you with information concerning any
testing or treatment he is going to provide. By opening up to your doctor he will be able to
help alleviate your fears. Good luck to you deme. I think you are brave for sharing with us.

Hugs, Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


deme
Regular Member


Date Joined Oct 2009
Total Posts : 27
   Posted 1/12/2010 11:05 AM (GMT -7)   
Thanks both of you

I have lists for all the new symptoms and worsening symptoms that I'm not sure if they are new, overlapping, or just worsening. I dont have lists from the stuff I know is migraine so I'm gonna make up one for that hopefully it will make it easier for him to do an evaluation. On the plus side I've been needing an evaluation on my migraines anyways I'm on disability and put off getting this done even though I have had significant worsening and am almost positive I qualify for 100 percent. I was pretty anxious to because the rhuemy wanted a check done for MS but I read up on it after I posted here and from what I gathered from reading that shows up on an MRI which I had one done a month ago and it was fine so I'm assuming I dont have to worry about that now.

thanks again yall are really great listeners

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 1/12/2010 11:11 AM (GMT -7)   
You don't seem to fear other doctors, right?  Well, a neurologist is just another doctor.  Testing will be done so that you can be helped but the results might be sent to your rheumy and your rheumy will be the one helping you.  So, try to think of it as yet another doctor's appointment.  If, for some reason, they want to write a prescription, let them know your bad experiences with medication and that you are not there for more meds but to have an evaluation.  The GI will be evaluating you too so I just bet whatever they find, if anything, will be sent to your rheumy whom you trust. 
 
Remember, YOU are the BOSS!  YOU hire the doctors to help you and you are paying them for their help.  You don't have to do a single thing you don't want to do.  Don't be intimidated by the doctors.  They are only humans, too.  You have every right to your feelings and every right to what is done to your body.  YOU are the one that is in control of that...not the doctors.  I love my Internist but I still don't do everything he suggests.  You can investigate things and decide for yourself what you will and will not do.  You have to be your own advocate when it comes to doctors.  So, please don't let this doctor visit frighten you because you are the BOSS!!!!!  Who knows....you might really love this doctor!  It wouldn't be the first time something like that happened!  yeah   Let us know how it goes and please try to calm down.  You will feel better if you do.
 
Sherrine 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


deme
Regular Member


Date Joined Oct 2009
Total Posts : 27
   Posted 1/12/2010 11:39 AM (GMT -7)   
Yep the evaluations are for my rhuemy so he can get a clear idea of what can be eliminated, what other conditions I might have, and what symptoms might be overlapping things. He also wants testing on things I acutally just wrote off as the way I was but he seems very concerned about them. But everything is being sent back to my primary care Dr. then rerouted to him. He found a severe vit D deficiency and has had me on 2000mg Vit D of that and then a COQ10 supplement both of which have helped me in different areas. I decided not to take the Lyrica he prescribed and he didnt even question my decision. He believes I have a lot more going on than what could be Fibromyalgia, migraines, and chronic headaches. So pretty much the GI and Neurologist are to rule out things at their end before he goes any further in his diagnosis so he has a clear picture of everything.
 
I should probably say all the Neurologist I have seen were either military Dr.'s or VA Dr.'s, seeing regular Dr's is somewhat new and it's nice you point out I'm the boss now before I got to see who they wanted me to see and if they werent any help I just had to suck it up and find a way to live with it. It was literally a choice of their way or nothing.
 
True story. My blood sugar dropped and I had an attack I knew what it was because I had it happen all during my 2nd pregnancy. I go see the Dr. she does a test for Hypoglycemia, test  comes back fine, she tells me I had a panic attack. So I go to the ship I had just transferred there and I had a low blood sugar drop, the ship gets back in port  they send me to the same Dr., she runs another test it come back fine. She tells me tests fine your fine and sends me on my way.  I go out on the ship again have another attack this time my blood sugar is so low they are worried I might go into seizures so they have a SAR helo turning on the flight deck for over an hour in case they have to medivac me off the ship. We make it back to shore the ship Dr. sends me to the same Dr. on shore, again she tests, your fine but you might want to carry candy with you where ever you go and sends me on my way again. The ship Dr. when I get back gets me kicked  off the ship within 3 days as a safety risk. I still keep having these attacks but now since I'm on shore I have plenty of time to surf the net read up on hypoglycemia and figure out a diet that works so I'm not eating snickers and drinking sugar water. I loved a lot of things about the military I especially miss my job but I dont miss their medical facilities not one little bit.

Post Edited (deme) : 1/12/2010 12:13:21 PM (GMT-7)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 1/12/2010 11:45 AM (GMT -7)   
So the neurologist will just be doing testing.  Try not to worry about that.  The doctors' that you feel comfortable with will be the ones caring for you.  That's great!
 
I am taking 3,500 IU of vitamin D3 a day.  I have vitamin D deficiency and so do many with fibro.  I live in Florida.  Who would have thought I'd be deficient in vitamin D?
 
I'm going to start taking COQ10, too.  I take a statin drug and that can cause more muscular pain.  It also depletes the CIQ10 that is in the body.  So, I'm ordering that today and will start that next week.  I hope it helps me like it has helped you!
 
Feel better and don't worry.  Your doctors are working together to help you.  Let us know what you find out.
 
Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


deme
Regular Member


Date Joined Oct 2009
Total Posts : 27
   Posted 1/12/2010 12:31 PM (GMT -7)   
The COQ10 is amazing I have a constant headache that just will not go away and since I started taking it its still there but its averages about 2 lvls lower in pain than it normally does, that 2 lvls might not seem like much but it feel huge to me! In 14 years I have never been prescribed anything that affects that headache, never had any painkiller have any affect on it. I accidentally discovered weight gainer 2000 helps but the weight gainer I cant take all the time it causes stomache problems but COQ10 does the same thing so I'm really happy about that. It also seems to help my fatigue somewhat and my tremors aren't as bad since taking it.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 1/12/2010 12:51 PM (GMT -7)   
WOW!  I'm now starting to get excited!  I sure hope it helps me like that.  I don't have the headaches.  I've never been prone to them at all.  My daughter, though, gets migraines so I'll tell her how COQ10 helps you.  I just hope it helps my other muscle pain.  I'll take anything!  Thanks for the encouragement.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


deme
Regular Member


Date Joined Oct 2009
Total Posts : 27
   Posted 1/12/2010 1:12 PM (GMT -7)   
I put my son on it and he says his migraines arent as bad and he doesnt have headaches as frequently he's only been taking it a month. I told him to try it for a week to see if he could tell a difference. He doesnt like to take anything even cough medicine and tylenol but after a week he said it seemed to help and after a month on it he said he can really tell a difference. Good luck with your daughter hope it helps!
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