Status
Not open for further replies.

JennyD

New member
Joined
Apr 6, 2015
Messages
2
Reason
Undiagnosed
Diagnosis
03/2015
Country
US
State
MD
My apologies in advance this is a long post but I am super confused.. A little background about myself, I was diagnosed with Celiac Disease a while ago, for those of you that are not familiar it is an autoimmune disease that triggers when you eat wheat, barley or rhy and attacks your small intestine (where all your nutrient absorption happens). The diagnosis took years to get and then another year to confirm once it was suspected. Anyway, that being said its been a while since this diagnosis and I have it well managed now. I am feeling great in terms of Celiac however as my body healed (It takes an average of about 2 years for Celiac's to fully recover from the damage caused) I noticed other symptoms that are completely unrelated... I will list them out:

*Flu like pain most of the time, mostly in my legs and back varying in severity
*Fatigue, mostly mid day and better with naps
*brain fog (this could be celiac, however it is at the point where it should limited to when i eat the wrong things so this is weird.)
*I wake up stiff and achy, I have to stretch to get moving
*muscle cramps, ,almost like charlie horses for no reason
*difficulty sleeping once to twice a week
*migraines, usually when i have to go into work, the florescent light bothers me pretty bad. This can be triggered by certain smells as well and people just don't get that not dousing yourself in perfume is an option lol
*Rashes that come and go (this could be celiac as well though)
*I cannot handle cold weather at all in any way, it is painful and literally hell
*Tingling sensations in my feet and sometimes hands, this is not often though
*Pain goes up significantly with high stress
*Sensitivity to touch (like when my boyfriend hugs me tight and crushes my ribs or lays his head on my shoulder... it feels sharp and not very good, the pain lasts for a while after the touch as well)
*tenderness in my body

These are just the most common things. So anyway here is where my confusion comes in... I went to see my general care doctor whom I love, she is fantastic. She gave me the touch test, all of my other bloodwork from my recent checkup (my bloodwork is always a massive list due to celiac) was great minus my vitamin b12 which I am taking shots for now. So she gave me the touch test and said "Yep this is fibro". Being as I went through hell for my Celiac diagnosis and I have genes, blood tests, and a biopsy I can look at and know without a doubt I have Celiac this comes as difficult to accept for me... It seems too fast I guess.

So my doctor went through the options of medication with me, I am opting to take a more holistic approach and still researching my options there, she is fully supportive of that. I asked if i should go see a specialist and she said there is no need, she is confident in my diagnosed and she can treat me. My prognosis is good, I do walk a bit and eat healthy due to my Celiac so my pain is mostly well managed and I am apparently doing all the right things to help with this already (Mild excersize, healthy diet, routine for my sleep, etc.). I cant do any strenuous excersize as it puts me down for a while but walking and stretching is ok. So that being said I want to avoid meds at this stage and I wanted to see a specialist anyway just to get a confirmation I guess? Again this feels so... fast.

So I went to see a rheumatologist, we didn't really jive that well. She listened to my symptoms, gave me half of the touch test then told me that it is most likely fibro... So this is where I got confused, she said that even though she doesn't suspect anything and I don't have a history of this, she wanted to rule out depression. I am the most upbeat positive person, I have zero issues with depression and really never have. I asked her if she needed to rule it out depression for a confirmation of fibro and she said no, and there was also no need to come back and see her and just to follow up with my general care doc for treatment for the fibro. Then she tried to shove medication at me saying that I can't survive without it basically. I expressed my want to take a holistic approach first and she got up and walked out, just like that. So, is this normal? Don't you need a specialist to work with you with Fibro? I guess I am just struggling since there is no definitive test... Does this sound like fibro to you all? I am considering getting a third opinion... is this overkill? Would any of you go see a psychologist for the depression thing even if your not depressed? I am just kind of lost...

I am struggling with being at work as well, I work for the government so it is pretty flexible, I just need to file my medical condition and I can work from home more than I do now (I am currently at 2 days a week and limited basis as needed). I would like to move to three days a week so I can manage this with less pain, so I feel like I need something more concrete... Am I just in denial? Would you all accept the two diagnosis as fibro? I feel like the rheumatologist kind of half A**'d my test then dismissed me for not wanting to take medication yet. lol please help... I am sure you all have been here before.
 
hello JennyD, the RA was right by doing the test she did to you. at some point, you will need the meds just like she said. come to terms with do you want to feel better with the meds? or do you just want to continue on the path you have chosen? the walking out on you when you said holistic, what did you want her to say to you? you have a choice to make for yourself on your treatment plan. make informed decisions about your treatment plan.
your PCP feels that she can help you with treatment is a very good thing, just remember that the PCP is there for colds and flu. thats why they always refer you to a specialist. they can write prescriptions, but only to a point that will help for a while. pain mgt can give you the opiates that the PCP cant do under her license.

good luck and read my posts what is fibromyalgia? and starting a daily log book. these will help you understand your doctors and help you find your triggers to your pain. keep posting and learning.
 
Thanks for the reply :) At this point I just want to learn what the options are, I don't do well with meds and often they make me ill so I just want to find some kind of balance. Is pain management something that folks with Fibro usually follow? Is this like a physical therapy/doctor? Sorry for all the questions I am pretty lost with this.
 
Hi Jen, welcome. Well a lot of folks do have CBT or pain management, it teaches u have to deal with your pain on a dally basis.but I myself iI leaned for myself what works for me.
I have not been to a class as I don't drive and I can talk to ppl here,so I guess we do our own CBT here lol.be open to trying things offered by your Dr what you got to lose .
 
pain mgt is for meds. strong meds. find the holistic doctor near you and get answers from them. then make a discussion. it too have allergies to meds. just finding the ones your not allergic to is hard. n find one that works on top of it.
 
JennyD,

With the symptoms you described I didn't need to be a doc to see you have Fibro. There is some value to trying the "natural" way but you will probably need some of both. Have you had your vitamin D checked? (blood test) Low D often can lead to higher pain levels. Be sure to drink plenty of water , get a good sleep routine, try magnesium malate (malate binds better),to relax the muscles and your mind, use heat--hot showers/baths and add some essential oil,(I like lavender) or use a heating pad. I tried SamE but it didn't work for me. Some try 5htp and there are other things as well, it's trial and error. I use both nat. and meds. There is room for both!

Very importantly: make peace with yourself about this diagnosis, it IS a life-long condition, you will have changes in your life. But there is help, there are many possibilities/choices. You already are exercising, eating well and asking questions.( You may get more help in the Fibro forum within this site)

Glad to have "met" you!
 
Last edited:
Status
Not open for further replies.
Back
Top