I'm tired of battling random pains daily

Bones, joints and muscles
1

I have was on here a few months ago and provided a list of my medical history, symptoms, and tests. ( Link to the post if curious to read- https://patient.info/forums/discuss/one-doc-says-i-have-fibro-another-says-fibro-isn-t-real-i-m-at-my-whits-end--450430 )

However, I am tired of hurting. I am to the point I just dont care anymore. If I were seriously injured, I would tell my family to just let me die bc I dont want to deal with the daily pains anymore. I can't take it. It's taking a mental toll on me.

I am a 33/M. I have been an athlete my whole life. No doctor ever finds anything. They say it's anxiety, but my anxiety comes from the terrible various pains that I battle daily that doctors never find an answer for. How can I treat it if all they ever say is my tests are normal that it must be in my head. I HURT. That's not normal. I want answers. I want resolution.

Here's my most recent battles....

- (3 months ago) Terrible headaches and neck pain. Had an MRI. Everything was normal, so doctor did nothing.

- (2 months ago) Light Headed, faint, sudden loss of energy. I battle this EVERYday. Sometimes it lasts more than others. At some point during the day I feel like I am going to pass out. My energy level drops and I feel weak. When this happens I usually notice that I am only able to breathe out of 1 nostril. My right nostril often closes throughout the course of the day for some reason. I do notice it to be worse when I am just sitting around on the weekends.

- (Within past 4/5 weeks) I had severe sharp pains in my lower left back and side. Also developed hemmroids for the first time ever. The pain was so bad it had me hunched over in the floor. I went to a gastro who did x-rays to see if I was "backed up". They came back normal as usual. I battled pains throughout the day in various parts of my stomach for the next couple of weeks. One day they would be on front right, just below ribcage. Later they would be in my side or lower back. Eventually they just sort of went away.

- (Within past week) I started have sharp needle like pains in my upper back, around and under shoulder blades, and around ribcage and into chest, Even laying down is uncomfortable. I went to chiro to hope for relief. Can't say it helped a lot. I took a hot bath to try and relax my muscles but by the time I got out, I was so nauseous that I had to lay down.

- (Today) My back pain as all but vanished at the moment. However, I am still sick at my stomach. Short burst of pain come and go all throughout my upper body and stomach/abdominal area. I am light headed and feel like I need to lay down and rest. I feel sick, but more frustrated than anything.

Every day is a new adventure or mystery. I almost dread getting going bc I almost wonder, "Well I wonder what is going to hurt today?" EVERY SINGLE DAY I hurt. Whether it's my back, my stomach, my chest, my head, my neck, my shoulder, etc. Whether it lasts a few few minutes or I battle it throughout the day. It makes me miserable. Yes I have anxiety, but it's all bc of this and I am sick of it. I just dont want to hurt any more. I know the pain is real. Yet after years of dealing with off and on pain in different place every few days then switching to another, I still have no answers. There is no hope for things getting any better. No doctors help me or even seem to care. I don't even know who to see anymore to help me.

I do not want to be light headed and feel like I am going to passout every day. I am tired of my muscles always hurting throughout my upper body (Some doctors say it's not fibro bc I dont have the trigger points all over or in my lower body at all). I am tired of eating and getting nausous half way through the meal. I am tired of going places and suddenly feeling sick and wanting to go home to lay down. I am probably the MOST tired of waking up every morning afraid of what pains and illnesses the day has in store for me.

I have anxiety about taking the anxiety medications they have given me. Ironic right? (Amitripaline and Cymbalta) Reading the side effects make me hesitant. At the first sign of one I quit the medicine altogether.

I don't know what to do. This is driving me into depression and I just dont want to deal with it anymore. This seems hopeless and I don't know where to turn or what to do. Sorry to rant, but it at least feels a little better to just get it out in here, in hopes someone will read it and either take something from this to help themselves, or can give me some advice to help.

2

Hi scottymar10 Has your gp refered you to see a rheumatologist, it is they that diagnose fibromyalgia. If your gp hasnt refered you to see a rheumatologist I would insist that they do. Once diagnosed your gp can refer you to a pain clinic and cbt. from the symptoms things youve experienced it does sound like fibro to me. but you need to be seen by a rheumatologist for a definite diagnoses and treatment plan.I cant take anything for pain so cant help you where meds are concerned. I just use wheat bags hot water bottles. it 10 years for me to get diagnosed and countless tests and seeing every specialist imaginable. get gp to refer you to a rheummy dont leave his or her room till they will. take care

3

Hi Scottymar10,

Trust me when I say I, and many others on here, get the randomness of pain and all the other peculiarities that fibro can throw at you. It took me seven years to get a diagnosis but I didn't even know what fibro was or that it existed. I had no idea what or who to ask for help. I too thought I was losing my mind.

Go back to your gp and insist on a rheumatology ap trigger points aren't the only way t to diagnose. If they say it's not fibro ( which I personally think fits) then make sure they tell you what they think. DO NOT take no for an answer.

Amateiptalin is a good med for fibro but there are many other meds that help such as Lyrica and gabapentim. When I got my diagnosis I cried with tried. I truly thought it was all in my head.

I'm not saying if all the above goes well you'll be back to your old self, I don't know how you'll be, but just knowing what's going on is half the battle.

Good luck with it all. Your not at the end yet but it's in sight. Get that referral xx

4

never heard of a rheumatologist. I just tell my family practice doctor to refer me to one? What does a rheumatologist do? How do they even determine if you have fibro? The day I get a definite answer, is the day I might celebrate, regardless of the diagnosis. I just want clearity. Once we identify the problem, then we can work to correct it. At this point it's just been years of pain and more and more questions.

5

Hi scottymar10 A rheumatologist diagnoses things like rheumatoid arthritus and arthritus he treats and diagnoses conditions to do with rheumatology. when I saw my rheumatologist he sent me for blood test bone scan and did a pressure point test on different parts of my body. their are 18 pressure points in total I got the full 18. rheumatologists can differ on how they diagnose fibro. But its a rheumatologist you need to see, he will tell you 1 way or the other if its fibro or not. If it is then you can hopefully get the help support you need. press your gp for a referal take care

6

Hi Scotty,

A rheumatologist diagnoses autoimmune conditions, conditions that attack the body. So rheumatoid arthritis, lupus and fibro for example. You will have to give a medical history, have a lot of blood tests, maybe scans or X-rays and a pressure point test. The last is to check certain points around the body for sensitivity to pressure. For a fibro diagnosis all except pressure test would be negative. That doesn't mean it's all in your head it's a diagnosis of exclusion

I'm not sure where you live but in UK you need a gp referral. Be insistent about the referral !!!

Good luck xx

7

Scotty,

​hi I have Fibro, RA and Chronic Pancreatitis... Have you had your pancreas checked? The pain you are describing sounds so simalar to what I go through with CP I also faint and throw up my back and my stomach and left side hurt in rib cage area.. Just a suggestion... I hope you feel better soon. Please don't give up I have felt this way myself before and it's aweful to be so myserabal I am truly sorry please seek a second opion! Hugs and hope!

8

Personally I don't believe you have to have all tender points... (and they aren't the typical 'trigger' points)...  Why I say this is because some folk can develope the cronic Fibro pain just in a leg or ankle simply are badly spraining or breaking it!   Fibro can manifest in one or two area's of the body and then move to other area's..   It took approx 7 years to take my hips and legs out.  Before this it was only my upper body.  However I do have an existing lower spine issue, but that wasn't affecting what I experience now...   My Hips, legs and feet to the tip of my toes burn, swell, chronic pain and sometimes aweful spasms, weird sensations etc....   You need to see someone who is an 'Expert on Fibromyalgia'....

Your despair and anxiety is due to 'the not knowing the exact cause' of your issues....   I know, as I have been there to.  After many years suffering such gawd aweful restricting pain, stiffness and even migraines...  Doc's and specialists were not addressing my issues at all.  And this all stemmed from a very serious car accident I had.  H'Trauma and spinal damage.   It's been so dam hard struggling, and battling people's attitudes toward me, the system being gross and hard to get anyone to take me seriously... In short, 'know one would believe me, because no dam doctor would identify what the issue/s are!....   13 yrs later and a dear sweet Head of Phycians of a Hospital, with absolute knowledge of Fibro knew exactly what my issues are.  Oh my gawd, and yes I had a wee cry, as it confirmed exactly what I thought...  

The diagnosis will not cure you, but it will ease your anxiety of not having a clear knowledge of what it is...    SEEK your answers in ever crook and cranny...  Do try to NOT get in a flap and a tiz over yourself.  1st.  YOU know you have pain issues...  learning to accept it, and to modify your day by day activities and ACCEPT you will have those dam down days and those when your in so much pain you can't get out of bed.  YOU MUST remind yourself that the worst pain days will ease back for a wee few hours to days and sometimes for some folk months to years.   I'm one that has it 24/7, and chronically that I walk like a drunk most days when I can walk.  I get a few hours relief about once every 7 months..(Pure Bliss)  

3rdly...  YOU are NOT on your own.  If others can learn to alter their days, their way of life in all things... so can you.  YES you will yearn for the days when you were fit etc... I was once athletic to...  not now.  But it's good to do gentle exercise and not over do it.  Water aerobics it's God for us.  

5th learn to breathe through the down days, and Smile and move gently through the GOOD Days... and appreciate them and respectfully appreciate yourself.  

:-)   We all know how you feel....   NOW go seek a good Specialist who is really familiar..   ps: your allowed to rant, we all do and it's healthy...!

9

Ive had a CT scan done and they said it looked fine, as well as countless amounts of bloodwork.

Everything always comes back fine.

10

Thank you for your response. I work a full-time job in a very stressful environment. I am in a managment position where I have to fire people regularly (which I do not enjoy doing bc I am a people person). I also coach high school basketball year-round. Obviously that is stressful as well. I had to leave the sidelines in 2 games this past year bc I got so light-headed, dizzy, and nauseous that I thought I was going to passout.

But yes, the health related anxiety has become a huge problem in dealing with the pains everyday.

11

This crazy thing is almost all my pain occurs between my waist and head. It's all in my chest, back, or stomach. Rarely do I feel pains in my limbs.

Here is the craziest symptom, I can have TERRIBLE pain that is sharp and needle like come out of nowhere. I can hurt for 2 or 3 minutes to the point I almost breakout in a sweat. Then, poof, it's gone. I can mash on the area that was hurting so bad, and I feel completely fine and normal. It doesn't hurt at all. It's like random severe pain that can occur anywhere in my upper body at any time, and can vanish in a matter of moments, or can trouble me off and on for a couple weeks. There is no pattern that I can idenitfy or culprit to cause it. It is all completely random as to occurance and clueless as to what is causing it.

12

Fibro can and does affect your inside to...  I have only in the last couple of years experienced the odd bouts of this.  From anywhere inside pains shooting out or the noring painful aching.  

Fibro manifest initially from any one or more point and is random there after, more so for some folk than others.

I have multi level injuries after my MVA over 10 yrs back, the spine totally affected and my head.  So, for me initially it was all to do with Head, neck and spine, down my arms into my hands.  REALLY Bad!

Have you ever had an odd accident yourself, jarred you spine in any way even in a minor way?

 

High Stress can I understand be enough to trigger the brain to 'Flip On' that switch to go defunct and do it's thing over the body..

I take it you've had full MRI's done?  

Does your random pains stem from one area, then branch out, OR are the pains just simply random anywhere, from anywhere?

How do you sleep?  On your back, side/s, on tummy??  And do you have any pressure type pain, or noring type aching when in your position?

Another thing is, have you ever had anyone massage your whole of back/spine?  If not, see if you can have some one do this for you.  Use a nice thin oil and get them to work their fingers gently into the sides of your vertebrae one at a time and see if you have any 'Real' tender nerve spots..  Sometimes these flared up area/s can shoot pain into what feels like 'into your organs' and can cramp you up to sometimes.  Enjoy having a good massage to as it truly does help the stress of the mind over the muscles of your body...helps to relax those muscles!  Gawd if only I could afford to have just one decent massage!!   I'd fall asleep irrespective of how painful it would be...

Probably sleep for a week to...

Don't get down, it's all about learning new skills.  Re training ones self, learning to 'Step Back' from what we know, what we love/d to do, what we are so used to being capable of... now cannot without paying a huge price for doing it!

Fibro isn't a death sentence.  It's just a dam inconvenience to our lives...  a game changer.  For some it will turn life inside out and on it's head, but it's still, 'not a death sentence'...  Some of us walk a little differently now, slower to.  Can't dance like we used to, but still maybe a little every now and then when pushing out the want and need for it!  Sometimes needing a hand to open or hold something, even something like a key or a pen.  We can still smile at the most important things.. feel that 'heart joy', for nature and things.  We can learn new things, new ways of completing some tasks.  Take up or learn other interests instead of brooding and moping...  

We can sometimes still achieve things...  Life doesn't completely stop because of Pain..  only puts us on slow or hold for those durations, or till when we are slowed to Neutral or in Park for awhile...

Top Gear is - fantastic -normal, and for some folk a rarity to experience again, whilst there are others who do for months or years.  

2nd Gear is - Okay, manageable with care. Not wishing to rock the boat, look out if you do.  

1st Gear is -  Dam, pushed the boat out and shouldn't have, OR just a simple case of the 'body is loading up again and it's blowing out regardless of how careful you have been!  

2nd Low Gear is - Oh gawd, I'm just sick of myself and it's a real struggle to  move or motivate oneself because of the pain and loading of the head and body or body part..

1st Low Gear is -   :-(  Major downer.  Brain/Body Parked, and locked down...  Can't take much more of this, but have NO choice.  Wishing, praying, hoping to pass out, render unconcious and sleep through it all. 

A Night, A Day, Days, Weeks into Months before surfacing fully.  Somehow we survive the Major Flares...  (one wonders sometimes how)  

Gently coming out of Park and either going UP the Gears or sliding back again for another round...  That's our Fibro Friend/Beast

All folk living in Pain from any illness are 'Great Warriors'... in my mind..

13

CP is hard to diagnose. They found mine on an mri after constant testing for 6 years straight. By that time I had already had it aprox 9 years.... don't give up something is going on. CP if you are malnurished can cause you to pass out have sever head aches body aches. It causes major abdomal and back pain mainly middle to left side. But everybody is different. I get confussed what is hurting from what sometimes as I also have RA and Fybro..... Best of luck to you keep on going till you find some answers. Hugs to you! and the others are right it could also be fibro. or RA lots disorders and dieseases can cause wide spred pain!

14

You are a God send although I don’t think I can believe in God anymore as why would he allow us to suffer like this.

I have been searching for anyone who has had the symptoms I have and have linked them to fibromyalgia.

I could never find anyone who would complain of the abdominal pains lower back pains tummy pains chest pains neck pains and near passing out without the usual trigger points or symmetrical pain points used by many to diagnose fibro.

I have just seen a rheumatologist after years of GPs saying I didn’t need to see one. in fact I was referred to a rheumatologist and was put on a waiting list and then it was cancelled because the rheumatologist looked at my recent blood tests and ct scans of which there were many and said I didn’t need to see a rheumatologist so cancelled my referral. I eventually got another referral with a different hospital consultant who has just seen me and examined me but found no tender points at the examination and said my bloods were pretty much normal and said I must have fibromyalgia because nothing else is showing up but I did have a positive test for anti nuclear antibody but it was none specific so might also be normal.
he did some more blood tests for lupus and rheumatoid arthritis and hepatitis but I have had them before and were negative. I haven’t had the results of these ones but he did say he would write to my GP and ask them to start pain medications again even though I told him I am so sensitive to the meds and have tried them all with side effects. I’ve had amitriptyline prepregablin gabapentin sertraline nortriptyline mirtazapine and others and I get side effects ranging from only just bearable but worse than the fibromyalgia symptoms to putting me in hospital with a super fast heartrate or incredible nerve like pain down my legs arms chest and tummy.

so the time you have taken to write your post has been so worthwhile as it has made me see that I really must have fibromyalgia as without the tender points for doctors to find I really was expecting a doctor to eventually say oh we are so sorry we missed this cancer in your stomach or liver or kidneys etc that can cause widespread pain that moves around the body from one day to the next or even after a few minutes.

until now no one has explained the pains you feel so I have been so worried that this cannot be fibromyalgia as no one else has said they have my pains.

sorry my eyes are getting foggy while writing this and I feel pain in my lower back and across my tummy just trying to concentrate on writing this comment.
my rheumatologist says that many people vastly improve when they get a fibromyalgia diagnosis but I’m not feeling it yet? he also said the best treatment is the holistic route but I haven’t even looked into that yet or what it entails although I have had some acupuncture and head massage if that is what holistic is but it only gave me temporary relief for a few minutes or hours and in the end I just couldn’t afford it no more.

I am hoping to try another new treatment that involves being wired up to a machine with wires attached all over the body for four hours at a time. its supposed to scan all your nerves in the body and find dysregulation and then the machine is altered and attached for another four hours to put everything back in its place. sort of like reseting your computer or defragmenting the hard drive.
testimonials of real people are saying its worked wonders for them and I really believe they are real and not just paid actors etc.

anyway will have to have a nap now as I am just struggling now with pain in my back fingers shoulders and my eyes are sore and unfocused with brain fog.

thank you so so much as I hope when these pains wear off I will have a bit more positivity after reading your post.

I hope you find some relief and if I do get this treatment and it works I will be sure to reach out to you and let you know.

Lee