How do you test for fibro?

I am new to this site, but looked up fibro symptoms and I seem to have a lot of them.

I am feeling pretty exhausted today. Was thought that I had lupus 2 yrs ago. Positive ANA, but went negative. Have been having a terrible time sleeping as my left leg pain wakes me up. i have dry itchy scalp, confirmed dry eye from eye dr., scarred kidneys, tiredness, dizziness...barely able to walk this morning. I have been lying down on my couch for the past 2 hrs feeling completely unable to get up and do anything.

I was feeling ok the past two days and may have overdone it with house cleaning and yard work. I also have a herniated disc L5. I have had trouble with my breathing. No one knows what that is. I have been doubling up b12 and feel I can breathe better. Not sure if coincidental.

Intestinal and stomach problems. Mom died from colitis very young, and my dad had peritonitis.

I have a genetic clotting disorder and on natto k enzyme to treat.

I have a lot of headaches especially to the back of the right side of my head.

Joint pain in my shoulders. Arthritic hands. Tight neck and between shoulder blades.

How do you get tested for fibro? My gp stinks, my rheumy stinks. I have only found my hematologist finally believes me when I tell her something is not right.

I feel like a truck ran me over! Ugh!

24 Replies

  • Welcome to the site. I presume you have looked at our mother site Fibromyalgia Action UK which has a host of good information.

    At the moment there does not seem to be any definitive test that can categorically say a person has Fibro. What tends to happen is that a person seems to undergo a barrage of blood tests and scans which come out negative and the diagnosis that is left is fibro. It actually seems to be more of a recognised condition in The States than in the UK as alot of doctors seem to this k of it as more a psychological condition than physical. What we tend to say on the site is that if you were not depressed before by the time fibro has had its wixkes way with you you are. I think k it is the constant pain and fatigue and the lack of good sleep.

    You do unfortunately have a lot going on in other areas health wise and also alot of fibro symptoms mimic other illnesses such as RA and lupus and thyroid to name a few so these have to be eliminated first. Many people here have had symptoms on and off since they were young but sometimes it has taken them years to be diagnosed.

    Hope this helps a bit with the explanation. You feeling like a truck has run over you is quite a common expression on this site.

    Take care and I hope you can soon get a clear diagnosis and some help. By the way one vitamin that alot of people with fibro seem to be short of is Vitamin so I wonder whether that is something you have been tested for?

  • Thank you rose wine. I do have a sluggish thyroid according to endo. But not to the extent of going on medicine. I take a thyroid support supplement occasionally. Hard to treat when it's not all the time.

    I missed what vitamin you said you were short of. I have low vit d do I take a supplement daily. I am getting tested for b12 in another month by hematologist. I hope I can get some answers too.

    Feel ridiculous sometimes because my sister who is a pediatrician, says this is all just getting old stuff. If you don't fall right in the range, then it's negative. Even if you are borderline. All this is nice, and you would think I would be happy. But, not when I feel really bad.

    One thing you said I thought was interesting about depression. I have had depression my entire life. And anxiety. Even if it's psychological, it is still showing through physical signs of Drs. Think anti depressants will take the pain and other physical symptoms away? Curious.

    Thank you for sharing

  • Sorry it is me not being too good have flu at the moment I meant to type Vitamin D I would have a test before taking the supplement yourself as I believe the ones given by the doctors can often be stronger than the ones we can buy over the counter.

    Yes in this country as well the doctors often given a low dose of an antidepressant to help a patient sleep and it seems often to have a knock on effect of helping with pain especially lower back pain. I did try the antidepressants but unfortunately the side effects were so bad I had to stop taking them which was mortifying as I am sure they were starting to help some of my lower back pain.x

  • Rose wine....I am concerned about why anti depressants would relive lower back pain? I have been on an anti depressant for only a year 20 yrs ago. I did not like the effects on me and I had numbness in my leg and chest pain. I have read recently the long term effects and never interested in going on again. If it is used as a blocker for pain, it is putting a bandaid on the symptoms and not finding what's causing the pain. I can live with my herniated disc pain. It's not so bad, and I am use to it. If I overdue it, I put ice on it. I also don't use any kind of ibuprofen as I have scarred kidneys and cannot take that anymore.

  • I think with alot of these things Natura it is used for one thing and then they find that in some people it also has an added benefit for something that it was not originally prescribed for. For example (Lyrica) Pregablin was a drug used as a secondary drug for Epilepsy but supposedly so Epileptics who happened to have fibro found out that when they started on it that it helped the neuropathic pain they were experiencing. I think that they found this out with certain antidepressants. I personally think I am just one of those people probably like you that antidepressants don't suit as I know I just felt terrible in different ways on the two I tried.

    I honestly think that in alot of instances the medical profession themselves don't understand how certain drugs work just that they do. The body and especially the brain which interprets pain signals is such a complicated thing that I sometimes wonder whether everything about pain will ever be fully understood.

  • Very well sister, the pediatrician, says to me quite often...doctors don't really know where pain comes from and why some people are experiencing it. We have a long way to go to find answers. I think we are all learning a lot on these sites, and finding we have similar experiences. Keep reading and posting...

  • Rose wine....I experimented last night with my natural stress relief rescue pastilles. My leg was hurting all night long, and I couldn't sleep. Took one of these pastilles, and the pain went away. Wow! These pastilles are actually for anxiety. My family and I take them to help with panic attacks, and generalized anxiety. They work well and are natural.

    I woke up with leg feeling good too. Still trouble with sleeping through though.

    Hope you are feeling well today.

  • Thats interesting were they the Bach Rescue Pastilles by an chance as a friend said she had used them when she was very tense and her muscles were aching because of this and she felt that they were very good?

  • Yes! Wow! My leg was hurting again this morning. I just took it again, and the pain is less. Weird? There must be some part of the brain that creates anxiety and is overstimulated for whatever reason, which gives us the pain. I think it's more than pyshcological. It is an actual part of the brain. So interesting....I'm going to figure this out yet....ha!

  • Oh, and yes, my vitamin d is borderline, I think 5, 0 being the lowest. And I take vit d everyday.

  • Hi I am from the big state of Texas (Tejas) in USA . Welcome to the site and hope you find loads of support and information here. With luck maybe a smile or laughter. We do tend to try and keep our spirits up. Also try to keep stress down. I am posting a link that you may find some information about fibro testing.

    Also be sure to look on mother site because it has all kinds of information about many issues we sometimes have!!

    So welcome aboard the fibro train! Kick back have a seat and try to relax. Because we never know which stop is next or what you may see, hear or feel. Hugs

  • Thank you regno for such a warm welcome. I find this forum very informative and helpful.

    And I do try to keep light of It all, but hard some days when the head is in pain or not working right. I get upset when my family pick up on my non words....I am definitely going to start a book if my brain keeps going this way. We already have a name: is the space between the neck and shoulder.......

    Hope your day is ok

  • Thank you ma'am for your kind words. Feel free to rant on your bad days we all do it. Laugh on your good days. And on the so so days just give us a smile so we know your just ok.

  • Natura, welcome along!

    No point repeating what others have said.

    Picking up on "I have had trouble with my breathing. No one knows what that is.

    Intestinal and stomach problems."

    From October the upper part of my stomach started becoming painful pain at the bottom of the ribs either side at front,,, a bit of bloating in there to, then problems with the oesophagus,, it then seemed to work its way down, bowel problems started later. As to the breathing I loose my breath and get breathless very easy now occasionally a bit of crackling in the chest which I can hear,, but the Dr is yet to observe.

    An endoscopy was done and showed nothing. Same with blood test for gluten intolerance.

    I stopped all wheat and a bit of an improvement was evident, then stopped all dairy and another improvement, I find soy upsets me terribly especially soy sauce, cannot even tolerate oats and potato chips are a no no even plain lightly salted!

    ( In the UK we call them "potato crisps", I almost speak fluent American )

    Not saying you will be the same but think you may find it interesting as a point of reference.

    Best Wishes, Ray

  • Thanks ray....that is sort of me. I was having trouble swallowing and getting anything down my esophagus. I think I have a hiatal hernia which explains why I feel full so quickly and bloated. I started taking a digestive enzyme awhile back to help digest things to liquid. It works pretty well. Keeps my bloating down. I also stopped dairy 2 yrs ago. Helps a lot. Gluten is hard to give up. Everything tastes like cardboard. The digest enzyme breaks down gluten. So, I cheat a little. Very hard to change the diet.

    Intestines good and bad days. Aloe Vera juice helps to heal, but I forget to take.

    Take care. Thanks for sharing.

  • Ray.... I am starting to puck up on the UK lingo....funny!

  • That was pick, not puck.....spell check...ugh!

  • Natura, Oh we all use what ever word comes to mind around here,,, and if we get any people who are picky about spelling we will probably make stew with their entrails. It's all part of the fibro,,,, not the entrail stew the word muddle thing.

    As to that gluten free bread Ucck! Cardboard don't even begin to describe it. I just don't do the bread, or any wheat or anything processed or bought in a box. I live on fresh veg and limited amounts of meat and lentils so far but I try to expand my food repertoire,, but no preserved meats what so ever.

    I could complain about it to the cows come home but whats the point,,, things just got so bad meaning Pain with ribs, possibly lungs and when I coughed all I could taste was blood. When you have to do something you will do anything,, trust me on that one.

    Are you using any meds to stop the stomach acid?


  •, I don't take anything for the acid. I refuse to take Prilosec. Some days are worse than others. I am not even eating anything and I get heartburn. If it gets bad, and intolerable I take tums. I have a theory it's vit b12 deficiency. I have been doubling up and I can breathe better. I think that b12 deficiency can damage the heart. I thought that is why i keep getting bad heartburn and can't climb stairs too well. (I am a little embarrassed to take elevators, but will do if I don't feel well)

    It's all so complicated and frustrating. Sometimes I am just exhausted trying to find a way to feel better. Ugh!

    I do have the terrible speaking words the right way. It's really bad sometimes.

  • Natura,

    Great that you can get away with calcium carbonate to settle things, suppressing stomach acid is as far as I am concerned a path best to avoid, if possible, for long term health.

    A few names, I think may interest you:

    Dr. Linus Pauling,, he proved to himself and others 1000's of patients, that the mitochondria of the heart can replicate.

    Even tho he got the Nobel prize twice in his lifetime once for peace and once for his input to medical science, his "theory" was rejected by western medicine!

    All cells in the body have Mitochondria.

    Dr Thomas E. Levy,,, "Curing the incurable"

    Hope this is of interest!

    Best Wishes, Ray

  • Thanks ray....that gives me hope. I hate when I read that a damaged heart cannot be reversible. And then I see, we make new cells everyday. Thank you for the positive info in overwhelmingly negative medical posts.

    I will look into those 2 Drs. I do believe there is someone out there with a theory that is not being heard.

    Are your symptoms under control if you don't mind me asking? And if so, are you on medicine?

  • Hello ,welcome I used to see your posts on the lupus site ,I to have lupus and auto immune stuff going on , I am now being told that I proberly have SLE from 3 of my 5 consultants but my main problems come from fibro ,and I find this forum brilliant ,we talk a lot about symptoms etc , but we do like to have fun to , hope you stay

    Shadow 😊

  • Thanks shadow....interesting how symptoms seem to jump labels. I didn't have these problems a year ago. Just started getting joint pain in my shoulder recently, and nerve pain jumping around my body. Especially my legs and feet. I do have some vericous veins appearing and wonder if that is effecting my sensitivity to pain. Use to get massages to help with back pain, and now my calves are killing me when someone touches them.

    I definitely think I still have some lupus symptoms. This summer everytime I got out of the ocean, my shoulders were stinging. I thought it was the sun bothering me, until I realized salt is a healing agent. I was always taught as a young girl if you had a cut, the ocean would heal it. I don't have any visual signs of lesions, but my skin must be inflamed. I know it is on my head. Sesame oil has saved my scalp. I put it on every morning.

    Thank you for sharing and listening.

  • I can see that you have been given some wonderful replies so I will just sincerely wish you all the best of luck.

    All my hopes and dreams for you


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