HealingWell
Search Close Search
☰

how do you know if they are just saying fibro because they give up... (newly diag)

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/12/2012 9:25 PM (GMT 0)
I was told by my first rheum I had psoriatic arthritis. He diagnosed me in 5 minutes and wanted to put me on methodextrate or whatever its called. Problem was I did not have a lot of joint pain and he completely ignored why I even went to the doc which was burning sensations in my arms that spread to my whole body slowly over time and digestive issues. Constipation never diarrhea, and bloating and rib pain... So his script scared the heck out of me so I went to get a second opinion. So my 2nd appt the new lady says I do not think you have arth, I think you have fibro... Ok, fibro fits some places but not all of them. So while I do not discard it as part of it I just do not think its the full picture. She recommended i real the book "The Cleveland Clinics guide to Fibro" Said you read that and you will relate pretty well. She gave me the first chapter and I read it and immediately was not relating. There was a sentence that said fibro is pain everyday, no exceptions. Thats not me. I can be fine for days... 2 weeks even, then like a ton of bricks it all falls on me and I am down for the count and its not pain. I would have a burning arm for a day then be fine for a month or 2. Then it was arms legs, the reprieve less... To now where I have maybe 3 or 4 good days then a horrible one or two. Pain is not my complaint. I do not have a lot of pain. I have these torturous sensations in my arms legs and face. Burning like a sunburn that will get to the point of a stinging pain. This is in the arms legs and face. Then constipation where I will not go to the bathroom or if i do its hard to pass and its not rock hard or anything, it can be loose and hard to pass. These issues have been pretty constant for 1.5 years. Newly for about 4 months I have been having extremely cold feet, hot flashes and a squeezing headache. Sometimes my head, neck and chest and legs will do a simultaneous squeeze. It freaks me out. It is not debilitating pain its scary feelings. I wake up and feel jittery and shaky. I can feel my heartbeat in my chest. Somedays my hands and wrists will hurt. Nothing is constant. Its like a ever changing pattern of torture not necessarily pain nothing consistent and it has slowly built to the point it is now.

I have had a gastro work up where he only said reflux and a neurological workup that was fine and EMG that was fine... Also I had a normal sed rate and CRP (though my high sensitivity CRP was 13 which is high and indicates inflammation) I did have a high CRP and rheumatoid factor that went back to normal the second round of bloodtests. I also have been told I have a lot of arthritis in my body for a 37 year old. Shoulders, neck, hip joints, knees and ankle. I am just so confused... and so tired of going to doctors and getting no where... :(

So I guess my question is can you have fibro without a lot of pain? Can you only have the tortuous skin and muscle sensations?? Can fibro come and go in waves and patterns or is it supposed to be constant? I also do not have extreme sleep issues. Its part of the patterns couple days I won't be able to sleep. But lately I have been sleeping really well... Can you have fibro (only) and lots of arthritis (without swollen joints)? I thought with fibro there was no sign of anything and you had pain and stuff like there would be arth...

I am so tired of docs with no answers that I am changing my lifestyle. Making my diet 80% fruits and vegetables seeing if micronutrients can help me heal whatever is going on... I know its a long shot but what do I have to lose? I have ate the standard American diet consisting of little to no fresh food my entire life. So maybe, just maybe.

Thanks for any info, I am really kind of at a loss with whatever is going on. I have read the internet twice, researched till i am blue int he face and nothing fits me completely. Thx for reading too...
Posted 1/12/2012 9:55 PM (GMT 0)
Hi Kay,
I hear your frustration.
I think with fibro, it's different for everyone. The more I read on here, the more I see how different some of our symptoms are, or what bother's one person the most, might not necessarily be what bothers someone else the most.
For me, pain was bad, but the fatigue and exhaustion were the worst! I seemed to be functioning less than most people with fibro due to how bad the exhaustion was.
I also did not have pain every single day (most) but there were exceptions.
As for your constipation issues, I just recently saw a GI Dr. I was experiencing the exact same thing you described- constipation,pain in my ribs, bloating and my whole abdomen was sore. It hurt to even touch my stomache it was so tender! After an upper endoscopy he gave me medicine for the GERD and Miralax for constipation. I can't say for sure which is the one giving me the most relief, but it's only been 2 weeks and I already feel alot better. My ribs aren't very sore anymore or my belly. So since you said you have reflux, if you aren't already taking anything, maybe you can ask for Prilosec and Miralax for your constipation. We are all so different, so what worked on me might not necessarily work for you, but I thought I'd mention it.
I hear you on how frustrating this can be.
I wish you well
Posted 1/12/2012 10:05 PM (GMT 0)
Kay,

Welcome to the forum. As Amber said, we all have very different symptoms and even describe our pain in different ways. You say you have burning and stinging - to me, that sounds like pain! But then again, you know your body.

It may not be fibro. You've researched and it doesn't seem to you to fit the description, so maybe the best thing to do is just listen to your body. I will say, though, that fibro definitely moves around from day to day (or even minute to minute!) I also have Irritable Bowel Syndrome, heart palpitations, shakiness, and I could go on and on....that's one of the weirdest things about fibro.

But then again, you could have something else going on. It's hard sometimes to know what's fibro and what's not, since our central nervous systems appear to be out of whack - that's the latest thinking, anyway.

If you check out "Fibro 101 (1st or 2nd thread here) you'll find all kinds of good info. Please keep posting and let us know how you're doing!

Debbie
Posted 1/12/2012 10:12 PM (GMT 0)
I have taken prilosec and I do have miralax as well! I really felt the prilosec was making my burning sensations worse as does the prescribed vitamin D supplements. I was at a point where I was feeling awful, legs burned and ached to the point I thought I had a blood clot (this lasted like 3 days), and it would be worse when I took my handful of pills. So I eliminated everything trying to see if I would have a wave as bad as it was when I quit taking them. Its been about a month and I have been alright. So I plan to wait a bit more then re-add the supplements and such 1 by 1 and see if any of them make me feel bad. Its so hard to know when things hit in waves what it is... If its just going to happen regardless what i take or not. I might think its whatever I am taking and it has nothing to do with it, no way to know. Its just so frustrating. I take tums if it gets too bad and it takes the edge off the reflux.

Nothing touches these headaches I have. Advil, Tylenol, alleve. None of them. I was going to buy excedrin next and see if it helped because these headaches make me think my head is going to pop off my shoulders.

Thanks for you reply! I have exhausted all my friends and family to where they think I am a bit nuts so it is nice to talk to people who understand. :D
Posted 1/12/2012 10:16 PM (GMT 0)
I am not familiar with psoriatic arthritis, but I was dx with fibromyalgia based on all the tender points 10 years ago, and I've never had a lot of pain.
However, I do have horrific sleeping issues and need to use a med to get into deep sleep. I also have a lot of other symptoms that are known to go along with fibromyalgia.
What you describe doesn't sound exactly like fibromyalgia to me.
Have you been tested for celiac and/or are you on a gluten free diet? Your gut symptoms could be either due to or exacerbated by gluten intolerance.
If you aren't already gluten free, I would definitely suggest you try it strictly for 3 weeks or until and if gut problems straighten out.
Then take a day and eat wheat pasta, wheat/rye bread, crackers, anything you want.
Wait 48-72 hours and check for symptoms. (If you already know this, forgive me. I don't mean to sound patronizing.)

Another thing to look into is Mast Cell disorders. Flushing, headache, gut problems, fast heartbeat, waxing and waning symptoms that are always changing ... I have a lot of these things too, and I am currently pursuing tests for Mastocytosis or Mast Cell Activation Disorder. Mast cells are known to be an issue with fibromyalgia, but one can have a MCAD and not have fibromyalgia. Symptoms overlap, and most doctors aren't familiar with MCAD's.

http://www.tmsforacure.org/welcome.php
Posted 1/12/2012 10:58 PM (GMT 0)
I was tested for celiac and it was negative. MCAD or the other I have never heard of and I have searched and searched for everything lol! I will go check that out!! I do often feel like I am allergic to something but have no idea what...

Neither of my 2 rheumatologists have done the tender point test and neither of them have taken any Xrays or scans of my bones. I am going to ask the PCP and see what she thinks. Frustration led me to get a new PCP and I have only been there once... It already been 1.5 years and I feel as if I am on page 1 of a novel with no words...

I just wish there was a definitive way to know yes its this or no its not and I do not feel enough has been ruled out or done to accept fibro as the only thing going on.

Thanks again the mast cells is a new idea to look into! Thx

ETA about the burning its not too painful. It just freaks me out. Its unnerving and having no answers or way to calm myself make it a million times worse. Everyone who has passed in my moms family was fine and then just all the sudden boom they keeled over dead. From her dad at 52 to a cousin who is only a couple years older than me, its been about 7 relatives since I been alive. So this worries me to no end and makes some like fibro, the umbrella disease with no for sure diag. tools, no blood test that says yep you def have this hard to take. :( Not that I do not believe it exists or even that I have it, its just not calming KWIM. I am rarely in pain, more of annoying discomfort to explain that further up there. And its in waves I had a bad day yesterday and pretty bad day today but I tell myself it will pass it will pass... Also if i was ever to have something other than fibro (heart attack, blood clot, I have MTHFR, stroke) I would probably stay home and die. I have had many rushes to the ER and realize they are useless. This also weighs on me. I have never been anxious, most laid back person but these burdens suck. I have 2 small children that I do not want to leave alone... The anxiety has gotten better but they creep back when its bad...

Post Edited (KayC04201231) : 1/12/2012 7:29:16 PM (GMT-7)

Posted 1/13/2012 1:42 PM (GMT 0)
Kay, do you have a teaching hospital near you?  Usually the best of the best work there.  There is a link in Fibro 101 that lists teaching hospitals that are all over the world.  You might want to check that out.

 

Fibro pain can feel like it's in the joints.  Fibro affects the muscles, tendons, and ligaments and we use these to move our joints.  So, it can feel like arthritis but you don't have the swelling, redness, or inflammation.  We also get the burning sensations on our bodies.  You might just have it worse than most of us.  We also get headaches.  And, fibro waxes and wanes, too.

 

Much of what you have mentioned are symptoms of fibro but you need to get other illnesses that have the same symptoms ruled out first.  I know you are trying.

 

Be sure to read Fibro 101...the second thread on the forum.  There are good links to 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.  We do not have all the symptoms and no two people with fibro are alike either.  That's why this is difficult to diagnose.

 

Please let us know what you find out because we really do care about you.

 

Sherrine

 

Posted 1/13/2012 2:02 PM (GMT 0)
KayC04201231,

A negative test for celiac: Did you have only the blood test or a biopsy with colonoscopy?
Even if the test was negative for celiac, you can have Non-Celiac Gluten Intolerance/Sensitivity.
At least 9 members of my family have this, and none of us have "celiac."
We all must maintain a strict gluten-free diet to prevent symptoms.
Gluten intolerance can present with either diarrhea or constipation. There is no one particular set of symptoms that fit everyone.

Regarding mast cell disorders, there are currently only two clinics in the USA that specialize in diagnosing them: one is in Boston and the other is the Mayo Clinic in Rochester, MN.

Aggressive systemic mast cell disorders can kill. Other mast cell activation disorders (as many fibromyalgia cases are now alleged to be) do not kill outright but create misery whereby the mast cells, which have accumulated at various places in the body, leak their contents slowly. Triggers can be cold, heat, foods, stress, exercise, etc -- the same things that trigger "fibromyalgia."

I am one of those lucky ones who got the vulvodynia. It is a burning, stinging, raw pain. It is due to an accumulation of mast cells "down there." Mast cells collect around nerve fibers, if I remember right. That could explain the stinging pain and burning.
I can keep it under control by watching what I eat. No fermented foods (anything microbial like aged cheese, sauerkraut, yeast, vinegar and all foods containing it, buttermilk, etc).

Also there are foods that contain high histamine naturally, and these can add to the histamine burden in the body (mast cells release histamine, which triggers many symptoms).
You can find a list of foods online if you google Low Histamine Diet. For me, spices like hot peppers and curry, are also a trigger.

Taking an anti-histamine -- and seeing some resolution of symptoms might give you a clue that you are dealing with a MCAD.

One more thing about masto disorders. They do wax and wane. They can change from day to day, hour to hour, even minute to minute. (Just like "fibromyalgia"!)
Posted 1/13/2012 2:52 PM (GMT 0)
Hi Kay...I also describe my pain as stinging and burning.  When I was first diagnosed after months of tests, my main complaint was a tingling sensations in my legs and it felt like someone was squeezing my ankles.  Then the burning pain started in my arms and back.  I don't really fit the criteria of 'all over pain' either...my arms and back are where I feel it most but as I age it wanders around.  I rarely have the dull or piercing ache others describe and there are days when I am not pain free but it is more like white noise in the background.  Today my 'arm flab' and right hip sting.  I DID jump off the table at the tender point test, and if your doctor won't do this, you can have someone else do it for you...like a friend or spouse.  There are charts of tender points on the Internet.  If you have fibro you might have IBS also which would explain the constipation...that is an issue of mine...never diarrhea. 

I hope you find the answers you need but just wanted you to know that I have the same symptoms you do...it turned out to be fibro...and no one person ever suffers in the same way.

Donna

Posted 1/13/2012 3:55 PM (GMT 0)
Thanks ladies. This is a great place. I was told from Xrays and CT scan for other things that I did have arthritis. The sacro joint (like the pelvis hip area) which I guess is common in psoriatic arthritis... Arm shoulder which I thought I injured heavy lifting and the X ray said lots of arth in the neck and shoulder. Got a cortisone shot and it helped for a couple months. They have never just looked to see the state of the bones because my joints are not swollen. I hate not being able to make sense of everything. I hate that so much and my MIL is a google doc and is telling me she just knows I am having hormonal imbalances and I need to tough it out and ride the waves. She is really driving me crazy with it, acting like a know it all and I am just a wimp and i want to just sock her in the face. Fibro rage???, it think I read that can happen lol

I have my second appointment with my new PCP today so maybe she can give me something.

Post Edited (KayC04201231) : 1/13/2012 9:00:22 AM (GMT-7)

Posted 1/13/2012 4:49 PM (GMT 0)
Hi Kay,
I hope your appointment with your new Dr goes well today.
It's so hard finding the right Dr's. I've hit a wall myself as the Dr who FINALLY dx me with fibro also believes I have CF but does not treat that and I cannot find ANY Dr's who do (Insurance and lack of Dr's who believe it even exist's) Ugh. My family Dr is not vey much help there either. Thinking it's time to find a new one which I hate doing, but I've hit a wall and don't think I have any other choice.
I wish you well, I really do. I know how exhausting and frustrating a process it is. Let us know how it goes. Keeping my fingers crossed for you.
Hope she can give you something for those headache's!
✚ New Topic ✚ Reply