Confused about my diagnosis, Help!

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.

I have every symptom you have and more. I would trust your GP diagnosis on fibro. I seen a bunch of specialist before I was diagnosis but it was my GP that ultimately diagnosed me. My GP also treats my fibro.

Sorry I don't think I mentioned that I was diagnosed and treated for fibro by a rheumatologist .

I am treated by my primary.. His wife also has fibro, so he is pretty sensitive about it..

At one point when i was pretty bad, he referred me to a pain clinic, but i cannot take meds very well, so he treats me for pain, with tramadol, low dose and i also seem to need an anti-inflammatory..which not everyone with fibro seems to need..

Anyway, i think it would be fine to be treated by your primary..but if you still want another opinion , thats ok too..

Did they check your vit d levels ? I would ask for that if they did not.

Fibro is a strange thing to diagnose since usually all the labs are ok. My fibro took 5 years to diagnose, and I've had it my whole life now that I know what the symptoms are (my mom, aunt and grandma also have/had it now that we know the symptoms!). The doctors looove to say that fibro is related to depression and put you on antidepressants. I've been given all sorts of cocktails of drugs and nothing has helped. I would only get the negative side effects and all of the symptoms would remain. So finally I got fed up and stopped taking everything. I did try going to a "holistic" doctor that was highly recommended. I am a big believer in natural remedies and such, but this particular doctor's approach didn't help one bit at all. Just cost me a whole lot of money. He prescribed a million different supplements and vitamins which did absolutely nothing to help my condition, only gave me constipation. The acupuncture treatments didn't help at all either. After 6 months of his treatments, I left his practice and never looked back. I do get fibro flare ups and manage them with my physical therapist. I try to eat pretty cleanly. Yoga helps me a lot, too. I know that pain meds and antidepressants help some people but in my experience, they made me miserable and only added to the problem. Lyrica for example only made me gain weight. I got 0 relief from it for other symptoms.

Long story short, if you have doubts about the fibro diagnosis, get another opinion. There are lots of other syndromes that have similar symptoms, and it might take a long time to figure out the true diagnosis. The treatment regiment is also not easy to establish so be patient.. You might have to go through a few drugs to find what works for you, or test out a whole bunch of remedies or lifestyle changes to see what your body responds to. Unfortunately there is no one-size-fits-all response to fibro :( Good luck!

Hi, Jenny, and welcome! It doesn't sound like anyone has done blood work to rule out other illnesses that have many of these same symptoms...illnesses like Lyme disease and lupus. There are several others, too. Just doing the tender point test should not be enough, in my humble opinion. Most of us have gone through a myriad of tests before our diagnosis was given and many of us used a board certified rheumatologist.

I think you owe this to yourself to find out for sure. You most likely do have fibro but, if you have something else, the treatment is different. We have had members who were diagnosed with fibro and it turned out they really had Lyme disease. Also you can have fibro and something else. So it's good to be really checked out.

You need to find doctors that will listen to you...even if you don't agree with them. My rheumy wants me on Remicade infusions for another problem I have and I refuse. What I'm doing is working so I'm not putting my body through that. But every time I see him he mentions it.

My internist wants me on Reclast infusions or Prolia for osteoporosis and I won't do that either! Oh, they love to see me coming! But they respect my opinion. After all, it's my body. I could be making mistakes here but it's my choice. I just think doctors are so used to just prescribing medications and I, too, would rather find something less harsh to my body....if possible.

I was offered Cymbalta (antidepressant), Savella, and Lyrica at various times and turned them down also. I don't want to mess with my brain chemicals and I'm definitely not depressed. Just ask the forum members!

I think we know our bodies better than anyone so I'm mindful as to what I will do. I do take medications for some problems I have but I always research things too.

I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a muscle relaxer called Robaxin that made a significant difference in my pain. I also walk daily as a gentle form of exercise and will soon be adding swimming to the mix, and I pace myself when doing things. All of the above help me be in control of my pain and I've had a full and enjoyable life in spite of this illness.

I do hope you find a doctor you feel comfortable with and who will listen to you. You should have some say in your treatment.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. Good starting links for you would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. You just might see yourself there. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine