One Doc says I have Fibro another says Fibro isn't real... I'm at my whits end!

Bones, joints and muscles
1

I read all these posts online all the time with people talking about their health issues. Everyone always says they have the same symptoms yet no one ever has any answers. After about 4 years of going through this I decided to give in and post 1 myself, hoping maybe someone can help me (find piece of mind if nothing else).

For the last about 5-6 years I have been experiencing random pain all over. However, it's usually only in my upper body. It started with high abdominal pains just below sternom. It then started hurting on both sides of my ribcage. Then I developed pain behind both my shoulder blades. My pecs would hurt a lot too. Over the years the following symtoms have all been noted....

-Chest Pain

-Abdominal Pain (sternum area and lower ribcage)

-Gassy

-Pain behind shoulder blades

-Neck Pain

-Daily Head Aches

-Light-Headedness

-Consentartion and Memory Problems

-Tired a lot

-Lack of Energy

-Impossible to sleep throughout the night without waking up multiple times

-Right Shoulder Pain

-Hot Flashes / Chills

-Unable to wake up

-Pressure in my head CONSTANTLY (ears feel full and behind eyes)

-Anxiety (but only over medical issues)

-Mentally out of it some days (I just feel dazed for no reason)

-Appetite comes and goes (sometimes starving, other times I can eat 3 bites and I feel full or sick)

-Random Sharp Pains that last a few seconds then vanish (usually in abdomin or chest area)

The symtoms usually come in waves. I will be fine for about 3 months with no health issues. Then BOOM, its 1 symptom after another. It will start with a week of chest pains. Then after a couple of weeks the shoulders will hurt. Lately it's been bad headaches and neck pain every single day. My body hurts (but only from waist up) every single day. Then after 3 or 4 months of random unexplained health issues, it suddenly clears up for no reason and I am healthy again. It's like an odd cycle that has continued for the past few years. 3 or 4 months of good health, then for no reason at all 3 or 4 bad months of bad health.

I have had the following tests proformed in this time frame...

-2 Chest abondinal CT Scans (both normal)

-Endoscopy (showed slight inflammation in stomach but otherwise normal)

-4 chest X-Rays (all normal, other than excess gas build up)

-Probably about 10 Complete Blood workups (always normal)

-Gluten Test (normal)

-Hida Scan for galbladder (normal)

-Ultrasound on galbladder (normal)

-Neck X-ray (normal)

-Stress Test for possible hearth issue (normal)

-Heart Ultra Sound (normal)

-4 EKGs (normal)

-MRI of Head/Brain (normal)

Every single test they run comes back normal. The odd thing is, I know I am in pain. I know I hurt. Something in my body is not right, yet they never find anything. One doctor said it might be allergies causing the headaches and pressure, yet my sinuses always look clear. My throat doesnt hurt, and i have no green mucus or cough or anything. Another doctor says it's just aniexty. However, the only thing I am anxious about is my health. When I get nervous I may sweat a little bit, but I don't freak out or have panic attacks or anything. I am only anxious bc I hurt so bad sometimes and i dont know why or whats wrong with me and no one can ever tell me anything. I tried an anti-depressant just to see if it was anxiety, but even at a mild dose made me even more confused, lightheaded, irritable and made me "out of it". The only thing it helped me do is sleep through out the night.

The first doctor I ever saw said it was Fibromyalgia. She said she guaranteed it. However, my next doctor I went to said he doesnt even think it exsists. He said it's just a blanket term doctors give when they kinda find whats wrong with you. My current doctor says he isn't sure about fibro. He said that he wont go as far as saying that it doesnt exist, but he refuses to diagnois anyone with it.

My chrio says that he doesn't think I have fibro bc I dont have all the trigger points. My legs rarely ever hurt. I had knee issues a couple times over the past couple years, but it's not a constant symptom by any means. My arms may have a weird phantom pain every now and again, but again it's not anything that is a regular issue. My headaches, my neck pain, my pain in my shoulder blades, my sternom/ribcage and abdominal pains are the worst though. The fatuge and light-headedness RUIN my days and make me miserable.

I am a 33 year-old guy. I am an AVID athlete. I play any sport imaginable. I coach high school basketball. I am 6'1 and 180 lbs. I shouldn't be feeling the way i do, but bottom line in... I DO! I am tired of doctors just writting me off as some crazy person or a hypocondriac. It's not just "all in my head". If I break my arm. I deal with it. I know what it is and i do what I need to do to get better. However, this mystery pain and nightmare I get every few months is ruining my life.

All I want is answers. I want to know what it is, so I can do what I need to do and get better. I almost wish they would find something when they do a test so I can have piece of mind, and let them fix me so I can go back to a normal lifestyle. All I am left with now, is pain and confusion. I just wish someone could tell me something.

2

Hi Scotty, firstly may I say I truly sympathise - pain syndrome of any kind, whether or not its fibromyalgia, is very difficult to analyse and treat and often impossible to diagnose when test after test come back as negative or 'clear'.  Although fibro can present with many different symptoms and pain issues, mostly they fall into common categories and your issues do sound slightly different to the 'norm' (if there is one) for fibro.  Strange as it may seem, headaches and arm pain can be closely linked to digestive issues - I had  undiagnosed IBS for some time and it presented with upper chest and upper arm pain which freaked me out and made me panic about heart issues etc.  Also, a good friend had diverticulitis which sneakily hid itself from diagnosis for a very long time and gave her a whole range of weird and wonderful symptoms including alternate raging hunger then a feeling of fullness or being bloated after having very little to eat.   The doctor who claims fibro doesn't exist is out of touch completely - but some still think this way, as fibromyalgia has only in recent years been recognised as a distinct condition and syndrome, rather than just a flurry of symptoms due to anxiety or depression etc.  

Whilst I'm not a doctor nor do I have any expert advice or opinion to give, I see recognisable signs in your comments of digestive issues, which may or may not be related to fibro (its common for fibro sufferers to get stomach problems, ie IBS etc).  Have you thought perhaps of exploring dietary routes - see if certain foodstuffs directly link to your symptoms for example by excluding them.  All you can do is carefully analyse your pain etc., and note when/how it happens and see if you can find specific activities and so on that trigger it so that you can keep a record to present to your doctors.  Unfortunately even if fibromyalgia is diagnosed, the treatment is very much just throwing stuff at the symptoms, as no-one has yet devised any reliable method of finding the root cause and treating it at source.  Certain anti convulsive or anti depressant medication, taken in very very low doses does have good results in a proportion of sufferers, but not all unfortunately.  Another possible issues is stress - stress can build up without you knowing it and the adrenal gland goes into overdrive causing all sorts of horrible body-wide symptoms - I had a stress related illness some years ago which made all my nerve endings inflamed, so much so I couldnt touch anything without being in agony.  I cant recall exactly what it was called - something like neurostasia I think but I do remember it was hell as even picking up something or wearing clothes was horrendously painful.  I took meditation classes, anti anxiety meds and eventually got through it.  Have you looked into meditation, mindfulness, yoga, etc? to see if you can bring your body back to a calmer place?  Unfortunately its a catch 22 situation, as being in pain can be its own stress causer.  Sorry I cant give you a magic cure idea but I hope you find some way of relieving your horrid symptoms. good luck hon.

3

Thank You for your quick rersponse. For the longest time, one common thing the doctors stated was the fact that something was going on with my digestive tract. Both of my gastro doctors didnt feel as if it were anything major though. Never blood or loose stools. I actually even had stool tests done (which no surprise came back normal). I used to be the gassy guy alive. I have NEVER in my life been able to belch. I am seriously physically unable to burp. If drink something carbonated the gas just sits in my stomach. When I am gassy it only comes out 1 way.

My diet is terrible. I eat out every day. I lived on fast food daily, for years. I drink pretty much just gatorade (1 or 2 a day) and sweet tea (rarely sodas though). I tried the whole "healthy smoothie in the morning" diet thing. That went terrible. I never eat greens or vegatables. When I tried a full glass of kale and spinach smoothie, my stomach wasnt sure what I had done to it. It ignitied a gas atomic explosion inside my stomach. I had the worst abdominal pain for about 3 days after that. Maybe I should try again but slowly grow into it instead of diving head first.

However, here is the strange thing. The past 3 or so much, hardly any of my troubles have been with my stomach or abdominal / chest pains. Most of my problems recently have been with insane amounts of neck pain and pain in the back of my head. the pressure is incredible. I seriously feel like my right eye and ears are going to pop. I get so light headed and dizzy sometimes it makes me nausous. I've had to leave the sidelines in basketball tournaments I have been coaching in bc I was so lightheaded, weak and sick feeling. it feels like a sinus pressure thing, but the doctor says my sinus look great. I had an MRI last week and they said everything looked normal. So at this point I have no idea what it is.

I have wondered if maybe it's a blood/sugar sort of thing. However, wouldn't that have showed up on my blood work?

 

4

Hi Scott. Was there a specific onset? If it was it's viral fibro. If it's not the n it's most probably standard fibro. 

How were you vitamin D levels? LDH Lactate_dehydrogenase? Thyroid? Cortisol?

My point is that alll this and more could give indications on your health state. Fibromylagia is REAL but it's a big umbrella. The doctor that told you that fibromyalgia doesn't exist is someone to be avoided. Things are bad enough as they are. You don't need ignorant people that say it's all in your head. 

So, it's most likely fibro. You may have (most of us have) some comorbities. thet should be checked.

Today I've posted here about my experience with LDN. Why don't you have a look? See if it's something you'de like to try. 

Take care. 

5

I remembred something else - this in my intuition working I'm a kind of alternatives therapies amateur: sacro cranial therapy. Look it up. See if it makes sense to you.

6

Hi, although I do not share a lot of your symptoms I do recognise the problems with the medical profession. For several years of complaining to my GP of feeling fatigued, having aches and pains, not sleeping well, tendinitis, eye problems, poor concentration, stress, anxiety, acid flux, restless leg syndrome, etc. etc. all was put down to and treated as depression. Even I thought I must be an hypochondriac, finely I changed my GP, I was tested for and diagnosed as being severely vitamin D deficient I thought great this must be the problem then, two years later with levels ok, and still felling terrible I did some research on the net, went to my GP with my suspicions that I had FM and now have been diagnosed, while I'm happy to know that this is not all in my head, the realisation that I Have got a chronic condition with no real treatment has made me feel depressed.

Ironic isn't it😟 

7

Have u tried peppermint supplements or colpermin which are over the counter or health food shop items. That may help slightly with the gas stomach issues.

The head pressure, shoulder pain and neck pain I can seriously empathise with as it is by far my worst area, my face and throat also hurts so badly to which they have never found an answer for. My symptoms started upper and slowly took over all areas. I don't know if the numb, tingly but painful tight face and upper body is some weird migraine or what. I can't work it out but I've read a million times that when ur neck is tight it can cause bad head pressure which maybe why your sinuses etc look clear but you are still experiencing this fullness.

I personally would avoid a chiropractor and try a physio instead. or acupuncture.

I hope you get some answers and find some relief soon.

8

Hello, I can relate to  your symptoms, I am a woman that has always been athletic. I have been in the military and worked as a patrol officer as a civilian. I have pain over my entire body, it has been worse at times, but I have been managing it well with occasional flares until lately. I recently started having pain in my hips and legs, different from before, but still debilitating sometimes. However, I do not let this stop me from living my life and getting out to do physical work and exericse. 

This is just some of my background. I know for sure that I have fibromyalgia, having gone to 3 doctors and all giving the same diagnosis, plus the three are specialists in Neurology, Spine Specialists, and Neurosurgery. I have been seeing a Neurologist for 17 years, because I had a massive stroke with CVA, nearly bleeding to death internally and therfore causing vision and vestibular problems. This led to balance issues as well as tinitus, I had extensive balance therapy just to learn to adapt to my environment and use cues to stabalize myself. I continued, however, to work as a patrol officer. I loved the job and wanted to remain active. I gave up running, because of tripping over even the slightest variation in the pavement, and also had to adjust my method of aprenhending suspects. Now, having said all of this, I want you to know that I have done extensive research on pain, brain abnormalities (I have what they call an anomaly on my brain), and have my GP doc on board with assistance in these things as well as the Neurologist I see isn't shy about getting tests done. I have had a lot of brain MRI(s) and even went to Johns Hopkins for study, because technically the stroke I had was so massive that I should have died, and also since I did live (only 6 people at that time were known to have survived the type of CVA I did) I should have had far more deficits. 

At first, I couldn't remember how to operate the radio in my patrol car, even street names were unfamiliar to me, luckily we obtained computers in our cars soon after I had this event. I have had to learn to adapt. 

Now on to the pain issue you are having. I have had many of the same tests you mention. I had chest pains so badly that I thought I was having a heart attack, resulting in several EKG tests, a stress test, etc. All normal. I had a heart CT, it was normal. Let me say, I have had quite a few injuries during my career. Also, shooting guns does damage to one's soft tissue in the shoulder, and affects the neck also. Plus, I have had a broken neck with a fusion from C2-C6, nearly paralyzed from that, but thanks to a great Neurosurgeon, and a year of therapy, I am able to do anything I want. That doesn't mean I should do it, though. 

Pain: There are several things that can cause the pain you are talking about. There's a thing called Myofascial Pain Syndrome- This causes pain in the neck and jaw for a lot of people, and can progress to all over the body. There can be a "knotted" feeling under the skin (I have had this, and months of massage helped greatly), and pain can range from stabbing, burning, numbness, weakness, and even a dull ache. This can cause memory loss and balance problems as well. It can cause headaches as well as hearing problems. This type of pain can be further compounded when a person has depression and/or fibromyalgia. 

The remedy for it is stretching, trigger point injections, and physical therapy. I have done all three. I had the aching shoulders, neck, legs, hips, and have had the injections as well as PT and massage. I stretch daily.. I don't think the injections work well unless the person giving them is very good at locating the right location for the injection. I have had one doctor that was not good at it, but then I found one that gave it them in an entirely different location and it made a huge difference. I haven't had problems with shoulder pain and neck pain in many years. I just got injections in my hips for pain there that goes down my legs. I am feeling a great deal of relief from these. 

As for fatigue, pain in and of it's self can cause fatigue. I would also suggest you have your B12 levels checked. I had the gluten test, etc. I found that my gastrin levels were extremely high, this is an indication that your stomach is inflammed to the point that B12 production might be affected. If Intrinsic Factor is not met with gastrin in the stomach due to the lining being inflammed, then you will become B12 deficient. This will cause memory issues, similar to dementia in a way, mine got horribly bad. Don't ignore the "slight inflammation" found in your stomach! I have had it for several years, mine had developed to the point to the lining had deteriorated and I have started developing polyps that are pre-cancerous. I have to go every year to get an endoscopy and each year for the past 2 years they've  had to cut out these polyps. I also have metaplasia and dysplasia, changes in tissue that can lead to cancer, so don't ignore this inflammation in your stomach. I would aslo suggest avoiding any type of NSAID! These are awfully hard on the stomach. Often people that have a lot of pain take them, and I did also, this is not a good thing to do. I take Gabapentin for my pain, it is working wonderfully, and I also take a muscle relaxer called Skelaxin (Metaxalone). I take Topamax for headaches, a low dose, and this works wonderfully. It has, of course, been trial and error for me. This is what it is like for people with pain sometimes. I hope this helps you in some way. 

Oh, regarding the chest pains. I believe when you get the shoulder, headache, and other pain under control, you will find that the chest pain also goes away. Mine did. It was the kind that would bend a person over, and now it is gone, I haven't had it in several years. Best wishes to you. 

 

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Hi Scott. I am sorry you are experiencing so much pain. I was miss diagnosed as having serum negative inflammatory arthritis in 2008. It took until 2013 with a change of rheumatologist that I was told I had fibro and osteoarthritis. My Vitamin D levels were really low and was given tablets, still have no energy and plenty of pain.

Like the others I would stay away from the GP who says fibro does not exist. You can ask to be referred to a rheumatologist, as they tend to be the ones who have more idea of what fibro is all about. Although there is no cure we can only hope for one to come along one day.

Take care and gentle hugs

10

Morning Scottymar;  I will tell you what I think.....yes, you do have Fibro...just because it is not running the "normal" course/affecting "all parts" like others are experiencing now....you sound very similar to how I first started out.....all I complained about, to my first dr, was "the burning pain that I got in my Scapular muscles"....a pain that I couldn't bear.....they first thought I had MS....and I went through Every test that the Medical professionals knew about...including the Horrible Lumbur Puncture....however, over the years (20+)....more areas have become affected....and when I look back, yes maybe the terrible Migraines that I had for 3 weeks at a time, which I had been putting down to hormones, may have been related????

My advice is to go back to the Original dr who gave you the diagnosis (if possible)..and get that referral to a Rhuematologist (taking copies of ALL tests/results....so that they don't need to be repeated)....and start getting some treatment...even Physio/massages...use of Magnesium tabs/baths, plus the essential vitamins (like D, E and Bcomplex)....the one drug that works for many of us is Amitriptylline...it works on our depression (which most of us suffer a little from the pain), and the burning pain that comes into our muscles.....and rest assured, I don't think Fibro labels any of us as being unfit/lazy before we succumb....all of us seem to have been Very busy people...leading active, high profile lives....so don't think/feel that any of us will ever judge you/say you need to "change your lifestyle/diets etc"....I don't think it has anything to do with these parts of our lives....only do the Best that you can, in decreasing stressors in your life, for I have found that with every Major stressor in my life (even moving house is a stressor), another body part goes....goood luck, and hopefully, being younger than I am, you may get some relief, bying commencing early treatment....visiting a Psychologist, to learn some mental coping mechanisms/validation of your condition (research a Psychologist who understands Fibro first)....and try Not to push yourself, thiinking that "if I do this/that physically, it will help me", .... as it doesn't...it just causes a worsening of the condition....take care, and let us know how you get on.....................Bron

11

Hi Scottmar10, you are not crazy or a hypochondriac, please don't let any ill-informed people out there let you feel that way.

I think the advice given you by others above is so true. The only other comment I can usefully make is on diet, I only say this because of personal experience. I take a probiotic every day, helps with digestion. I also find cutting out all additives, preservatives and in general processed foods helps my body and mind cope better. I have learnt this the hard way.

For me the whole chemical balance of our minds seems out of wack which sends us these scrabbled pain signals. At this stage they don't seem to have a cure, they can only give us medication, that sort of works sometimes to alleviate symptoms and Cognitive behaviour therapy. 

I think gentle stretches each day are an excellent idea, it is a great idea to go to a physiotherapist and get the correct ones for you, and build up slowly. The other exercise that is meant to be good is hydrotherapy, if you have access to a heated pool.

Good luck and I hope you can find the right medical support. I go to a pain clinic and I find them wonderfully helpful and well informed.

Meg

🌻

12

Hi scottymar10. I would go with the 1st gp you saw, that said you had fibro. I would totaly ignore the 2nd dr. who is an idiot. FIbro isnt widely known about their is alot of ignorance in the medical world where fibro is concerned. It needs to be put out their more where it is more recogniseable, the medical proffessional need educating in it. fibro is based on pain and many symptoms. it is normally diagnosed by a rheumatologist this is after all other conditions it could be have been ruled out. I was finally diagnosed in march last year after 10 years of wondering what was wrong with me, and having many tests and seeing many specialists. my dr finally refered me to see a rheumatologist where he did a pressure point test their are 18 points in total over different parts of the body.he sent me for a blood test and bone scan. this was to rule rheumatoid arthritus.When the results came back it showed I was low in vitamin d I was told it was fibro sent back to my gp.your gp normally prescribes pain medication. They can also refer you to a pain clinic in some areas you may be offered free acupuncture for 12 weeks you may also be offered hydrotherapy.every test I had came back normal , that what can happen when you have fibro.I hope you get some answears soon. research fibro see what you think go back to your gp. They normally like to rule out other conditions before refering to a rheumatologist, a rheumatologist is normally the person who diagnoses fibro take care 

13

You have my sympathy to scottymar10, definitely Fibro in my book, and as for pressure in the head and effects on the eye, yes I have the same. My area is at the back left side, one eye cops it badly.  There is also the minor muscles over the skull that cramping up feeling like a migraine...  Very debilitating.  After a serious MVA, I have developed high level full body Fibro..  It isn't an easy life, huge adjustments in everything to cope.  I was once a very fit and active person to.  Very physical and was into fitness and a little body building.  After my MVA, everything changed and whilst some things improved I was left with the residual and over the years things just got worse..   Fibro is a B'arch...  and so far no real info on it's inception (if thats a way of saying it).. 

The Mayo clinic have a info and show brain scans of fibro sufferers vs normal.  Very interesting to see the area's that are common show up are the exact areas that I have abnormal senations/feelings, and or pressure, and or aches and pain.

They are working on it, hope they get to know how to prevent and cure it.

Lilylelani, you post is very interesting and informative thank you for sharing.   

14

Thanks all for your responses. I appreciate the imput. The good news is (for now) the headaches and neck pain have subsided. My MRI came back clear. This isn't a shocker though bc all my tests always come back normal.

I created a new post today if you want to read and give input there as well. Thank you again for your shared stories and advice.

 

15

Here's the thing, there's not a test for fibro. It's diagnosed by exclusion. First they check for lupus, then your thyroid and so on and so forth until they have excluded every other  possibility.

That will take a while but some of the things you mentioned make me wonder if you are having algnment issues. I would recommend while you're waiting on the other tests to have a medical massage clinic or chiropractor x ray your neck and spine. I understand that was one of your clean results but depending on the type of specialist that looked at it they may have missed something. You have no idea how livid I was after 10 months of testing for daily migraines that the x rays that proved I had lost 40 degrees of neck curve and 5 degrees to the left causing pressure on 3 areas of my brain and resulting in so many symptoms and agony that the same information had been available on the first CT scan, the first mri, the second mri.. well you get the idea.