I need to talk to someone who doesn't say it's "in my head" help please? Do I have FM
I have been to countless doctors. It started when I was a Junior in High School I had been going to Physical Therapy for all over pain, my neck, back of the head, collarbone, chest area, hips, legs, back. EVERYWHERE. I went a year ago too for my knees because they'd swell up and the sides would hurt too bad I couldn't go up stairs and down for my college classes.. and she was trying to treat my knees and ended up trying to help every part of my body but she said it was too much and i need to get answers for my pain..
I am 20 years old now
I am going to try to make this quick and list my symptoms for you.
* Always tired even getting 6 hrs of sleep to 15 (i wake up tired and like i fought someone in my sleep i get so sore)
* almost always have a headache, feel blah
* anywhere i touch or someone else touches or lightly pokes it feels like they're poking a bruise
* i actually looked online at pressure points and they match all my bad ones
* i have IBS
* i got on birth control pills when i was 16 for horrible PMS
* anxiety runs in my family and i have it
* i cant even be a cashier, i struggle with horrible shoulder pain all day and cashiering makes it worse, but i NEED this job to support myself.
* i am very sensitive to hot and cold temperatures, my feet always turn purple and are freezing as are my hands
* i get migraines a lot from light or noise, or just because
* light and noise sensitive
* sometimes i get nerve pain where it feels like i layed my arm or where ever on a hot pan and it scalded it and i'm feeling the after effect of the burn
* i have oral allergy syndrome for every raw fruit and vegetable
* allergic to latex too
* i have a weakened immune system from chronic bronchitis and pneumonia since i was born and up to 12 years old, i am usually always sick
* sex usually gets rid of my pain for a while, I think it's the oxytocin? (spell?) and exercising over a period of time
but it also hurts me on the inside too much
that's what i can think of at the moment. A couple doctors told me it was in my head because they ran all these blood tests for muscle diseases, they checked my vitamin levels, CTscans, checked for arthritis, blood count levels, everything.
I HATE GOING TO THE DR AND EVERYTHING COMING BACK NORMAL, and NO diagnosis. I just went to a doctor a couple months ago and he thinks I could have Fibromyalgia, I didn't even bring it up to him I let him decide. I told him everywhere I or someone else touches it hurts, and I can't get good sleep EVER, I never really have energy at all, and I do not have depression, he just gave me medication they sometimes use to treat FM since it has depression symptoms, and the pills make me sleep when I'm in pain..
my mom blames everything on my low dose Loestrin 24 FE birth control pills or says i'm "out of alignment"..
I am only on birth control and no other medication and she wants me to go to a chiropractor but my body is so fragile I don't even want to go
Please help I want to be able to live a normal life
Last edited by caisaco; 01-02-2013 at 04:10 PM.
The following 4 users give hugs of support to: caisaco bluemoondaisy (02-08-2013), catkaru (01-24-2013), dfwmom (01-25-2013), rosebuddy (01-25-2013)
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
hi and welcome,
first suggestion is change your birth control just in case it is adding to the issues. next check all your work ups for a blood test for sjogrens disease. it is not one they run but many of your symptoms suggest it may be an aspect of your reality. i have fibro and sjogrens. i went for years thinking my only problem was fibro but not all my symptoms were quite right. i did my own reseach and demanded the test. sure enough i have it. tho it is not curable for some it can be managed with meds. i cannot take them and have an aggressive case.
the dreaded doctor who diagnoses fibro is a rheumatologist. have you been to one? personally they bug the heck out of me but are a necessary evil. giggle. it is hard to find a good one. i fired like 5 of them before i found the guy i see now.
no girl, it's not all in your head. however i do suggest finding a therapist to help you adapt to the body you have. i did and it was a wise move. i do not have depression. i am afflicted with endless joy, giggle. not even my health can get me down. but i did need some guidance for coping with my body and he really helped me learn some good techniques and how to eliminate stress factors in my life. of all the doctors i have seen, and i currently have 15 doctors, gary, my therapist has done more for me than any pill or doc or test. i am happy as i am and in the end that's what matters most to me. i have not seen him in over a decade. i did see him for 7 years.
peace,
bluelakelady
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life does not wait for one to get back on their feet.
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
It's not in your head! Most people with fibro, RSD etc see a minimum of 7 docs before being diagnosed! sadly if doctors can't see it in a x-ray or lab test (and the patient is a woman) they say it's in your head.
I've been diagnosed with both RSD & Fibro. I was lucky and got a great pain doc (my third try) That was in 1994! hard to believe it's going on 19 years! There are good days...and yes there are bad days. I've had to learn to pace myself. Keep looking for a doc that will treat you as a whole sane person!! gentle hugs! Judie
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
It's not in your head! Most people with fibro, RSD etc see a minimum of 7 docs before being diagnosed! sadly if doctors can't see it in a x-ray or lab test (and the patient is a woman) they say it's in your head.
I've been diagnosed with both RSD & Fibro. I was lucky and got a great pain doc (my third try) That was in 1994! hard to believe it's going on 19 years! There are good days...and yes there are bad days. I've had to learn to pace myself. Keep looking for a doc that will treat you as a whole sane person!! gentle hugs! Judie
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
Thank you... I just really don't even feel like trying anymore because literally EVERYTHING comes back normal and sadly, I hate it.
Should I make a rheumatology appointment? I don't even know what to tell them they just will order blood draws and don't say anything till they come back NORMAL and won't know or care what to tell me..I feel those specialists will be the same as my doctors and ENT.
And no, I have not been to a rheumatologist, why did they "bug" you? Was it a good "bugging"? I want someone eager to help and not look at me, and my tattoos and say it is either drugs or Hep. C.... and NO, I do not test positive for either
I take a very low dose of hormones for the birth control pill I am on but there is a newish pill that has half the hormones and that's only 10mg or 10 something of hormones haha. I just know its the lowest amount of hormones proven to prevent pregnancy and help with PMS, so wish me luck on that
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
hi,
how did they bug me? giggle. most of the ones i found were drug faithful. the guy i have now follows my lead and let's me have my way on treating my body. some were just creepy, some know it alls, and a couple of complete poopyheads. i don't remember all the why's but the bottom line is i want a doctor who listens and accepts that i know my body better than anyone does and yes i need their assistance but not them to run my life. that's my job. i was a surg nurse so i can be a tough patient to treat.
there are many natural ways to help yourself so research some of the old threads for great info on the many choices you do have.
thanks to superchick. will investigate this product.
peace,
blue
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life does not wait for one to get back on their feet.
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
I think my next step is yes, finding that specialist and making appts.
I have one last big question though, well concern too.. I am ALWAYS "sick", you know, horribe headache, runny nose, I sneeze it feels like my teeth are going to shoot out, face pain in cheeks and temples and jaw, throbbing actually, sore throat, fever (I KNOW when I have one, I don't need a thermometer) stuff like that. I went to general doctors and about 20 I've been to say its a sinus infection and I need antibiotics, I get these "sinus infections" about 8 times a year, and they last months, I was last sick for 3 months, went to an ENT specialist after I went to the dr and he told me that I had no infection signs, took xrays of my sinuses and literally everything checked blood too and he said I have no signs of any infections when I just went to a dr 2 days before that and felt worse. He put me on antibiotics anyway and they worked about 10 days after...now today I am sick again.
When I just was better for about a week after taking those antibiotics.
Could this be all in my head? I know FM sufferers are extra sensitive to everything..so what about feeling like complete crap and sick as a dog but just that being a FM symptom? I know I have a fever as I'm typing this,..
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
hi,
have you ever been tested for allergies to foods and enviournmental goodies? rather than infection it sounds like you get hit by an allergy really hard. antibiotics are on my only if i have to list. perhaps some saline spray for your nose and clean it out often may help.
also not a symptom of fibro. happy hunting!! check the ama on any doc you are considering and when you call the office ask the staff what they think of the doctor. listen to their tone. it will tell all. ask if the doctor works with difficult cases as you think you may be one of them.
peace,
blue
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life does not wait for one to get back on their feet.
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
Okay, I do have bad allergies, I was on shots for 3 years and got off them my choice like 5 months ago.
Right now, my throat feels like I'm swallowing glass, my skin burns, I feel like I have the flu, and my tummy is doing that "sick" gurgling, I called out of work today first time ever.
They want me to get re tested and I think I just might, I am allergic to outside basically haha. I have so many allergies. I also have oral allergy syndrome and lucky me, this flares up with EVERY raw fruit and veggie I eat when in reality I'm only allergic to like 5 fruits and veggies but all the others are intolerances and act exactly like an allergy, you know, swollen lips itchy neck and throat, itchy face, tummy, body. I also have a soy intolerance, I don't care that they said it didn't show up as an allergy I get nauseous and itch all over when I drink soymilk or eat soy things (I am a vegetarian and soy is in everything!)
It sucks when things show up negetive when I know I'm allergic
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
hi,
do the testing and go from there. most important is don't give up till you have an answer! sorry it's a yuckie day for you. sending healing hugs and giggles. attitude is everything! giggle.
peace,
blue
__________________
life does not wait for one to get back on their feet.
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
Firstly, it is NOT 'all in your head'. Young people can get fibromyalgia too... but diagnosing it is a process of exclusion. All of those negative/inconclusive/normal test results while you feel miserable are very frustrating and they can lead you to think you must be imagining your symptoms (I have that discussion with myself regularly!), but they're a normal part of finding out you have fibromyalgia. They need to rule out a bunch of other stuff that looks like fibro before they can say that that's what you've got. It doesn't make you neurotic. If you go to a rheumatologist, they'll take a history of your symptoms, look at your test results to make sure they're not out of whack, and check your pressure points etc.
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~ asthma, allergies, anxiety, arthritis, back problems, high blood pressure, fibromyalgia
The Following User Says Thank You to Kaji For This Useful Post: jamieann123 (01-25-2013)
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
Hi, It is not all in your head that makes me so mad I could scream, so many people have this all over body pain it is not something that is not real. It has been proven by drs that this is a true illness, you need to go to a rheumatolgist he is an arthritis dr and he can diagnose you, hope you feel better soon.
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
ENT specialist looked in my nose mouth ears everything when I was super sick and saw a dr the day prior who diagnosed it as a sinus infection. The specialist goes, well you have a severe deviated septum I can tell you that, but absolutely no signs of infection, not saying you don't sound sick that cough sounds bad. I made him give me antibiotics. I went back to him to get my CT scan results, all clear, he took my blood too and tested blood count and other things, normal. I got allergy tested by his nurses ( I stopped my allergy shots myself in summer been on them 3 years) I went to his nurses and him to grt a second opinion. Everything swelled up I'm allergic really bad to every tree made in Washington State, every type of grass, cats (I have 2), every weed, dust, dustmites mold. New ones: peanuts and soy. F my life.
I'm going back on allergy shots because my dr thinks I get "sick" so much from allergies.
I woke up this morning feeling so sick I'm crying right now. My symptoms
Felt sick night of 18th and when I went to bed woke up like ten times sneezing throat feeling like swallowing glass, head throbbing so bad I can't get up, eyes leaking, nose just running like a faucet, back of throat pounding. just whole neck pounding too. Upset stomach. Eyes hurt to move. Sick the 19th really bad (today). I just don't know what to do, I took a clariton just in case to see.
my skin just burns, it hurts my hands to type. It feels like the flu you know how your body deeply aches and anything that touches your skin burns it?
Should I see a different ENT specialist and rheumatologist and explain my sick symptoms as well as all over body pain and always tired?
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
I was first dx with fibro at age 30 and re dx years later by a Rhuematologist. I'm 60 yr old female so I definitely feel your pain. It's not all in your head. I send you a hug and tell you, you are not alone. I feel pain when my dog lays in my lap, that's not supposed to hurt, but this fibro is a crazy thing. I wish it DID show up on a lab test. I'm sure you do too. I would advise going to a Rhuematologist. He's your best bet for a diagnosis. But even so, ask around first. Not even they are all nice and understanding. I miss mine. He moved out of state and I still get a Christmas card from his nurse! God bless you as you work your way through this confusing maze.
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
I was first dx with fibro at age 30 and re dx years later by a Rhuematologist. I'm 60 yr old female so I definitely feel your pain. It's not all in your head. I send you a hug and tell you, you are not alone. I feel pain when my dog lays in my lap, that's not supposed to hurt, but this fibro is a crazy thing. I wish it DID show up on a lab test. I'm sure you do too. I would advise going to a Rhuematologist. He's your best bet for a diagnosis. But even so, ask around first. Not even they are all nice and understanding. I miss mine. He moved out of state and I still get a Christmas card from his nurse! God bless you as you work your way through this confusing maze.
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
I am new to this site but I thought I would add to what everyone else has said. It's not all in your head, honey it is all over your body. I don't have one place on my body that don't hurt! My PCP has been treating mine for about 2 years. I was in a car accident in January of 2009. I received 6 bulging disk in my back. Soon after that I got a Divorce, Started seeing my first Husband of 26 years and the father of my 3 children. In October of 2010 I had to have a reconstruction of my vigina, Rectom and my bladder put in a sling. In july 2010 i remarried my first husband. By the way that is the best thing I ever did. I am having new problems now. I got up one morning and I had to run to the bathroom really fast and I was wetting on myself, with a bowel movement to follow as soon as I got to the bathroom. I am having lower and upper back pains and alot of pressure in my vaginal area. I thought it was a bladder/urinary tract/kidney infection, so I went to my PCP. He did a in office check and sent it to the lab. All was clear so he sent me to my GYN thinking it had something to do with my recent reconstruction. SHe checked me and said all of that was fine, she said I could go to my Urologist to have him check his part of the surgery but she thought from my symptoms that I had done something to a lower disk in my back. So I went to my back Dr. he sent me for a MRI, it showed everything was worse but not enough to cause my symptoms.he then sent me to a neurologist to have a nerve and muscle test done. She said I have some nerve damage and alot of muscle loss, she refered me to a Fibromyalgia Specialist. She also told me to have my Vitamin D and Vitamin B12 checked. I am due for blood work from my PCP so she told me to have him do it. I called to get in with my PCP and his nurse made me an appointment and told me to go ahead and try to get in with my Urologist to have him check me out before I come in next Wed. I go to my Urologist tomorrow. I am at the point of PLEASE would somebody find out what is going on and help me.....this is all in the last 10 weeks!!!!!!!!!!!!!!!!!!!!!!!!!!!
So I understand your frustrastration.
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
rheumatologists see more people with fibromyalgia than arthritis. I found mine because he was involved in clinical studies on fibro. I also see a pain mgmt doctor and have been for 9 years. I was immediately diagnosed by my pcp because his wife is a rheumy. I had so many of the symptoms you listed. I had to wear very soft clothes, and stay in a room with no a/c. The cicadas outside my closed windows sounded like they were in my ears and turned up high. the fan sounded like an airplane propeller. I couldn't finish a single sentence. I would forget my point. I would get lost in my own little town. I couldn't sort the bills, pay them, file them. I cried a whole lot. I was bedridden for about 2 weeks. I had a old whiplash and let myself get too stressed and my body just couldn' take it. The burning skin was so painful. The only thing that would work was neurontin. I don't have that anymore. Fibro hit me like a ton of bricks. I had to stop working. I started therapy which I highly recommend because of the loss of your good health. I was taking Percocet for pain for a long time, but I got addicted to it and just recently got off of it.
A good book to read is Fibromyalgia and Chronic Myofascial Pain by Devin Starlanyl. She answered all my questions and it was such a relief to read my symptoms and no I wasn't unique.
I don't have many symptoms any more and i know it's because I don't have much stress in my life. Stress releases cortisol into your blood. I do have a problem with "fibro-fog" short term memory loss. But am also going through my meds to see which ones cause that too.
I know it's hard. I am on Social Security. I think if i went back to work, my symptoms would have come back. But I am also married to a nice man who makes enough money to support us along with my SSDI. I wish you could see my doctors, they are wonderful. Good luck to you and I hope you find a doctor and feel better soon.
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
Hi,i just signed up on this site..but pretty much everything you explain are things i feel too,and ive been diagnosed huh ready for this..lol.. fibromyalgia and or neuropathy.. i think you should make an appt. with your family doctor that mentioned fibro. and ask/tell them to give you a referral to see a neurologist.they can not tell through bloodwork ect. if you have it. its pretty much monitored by long periods of time by symtoms the neuro's watch,they dont even know really what causes it. its horrible to go through and to wait for an awnser.but its the brain and nerves so all they can do is pretty much wait it out and keep a symptom list of what matches what and what is like... how do i word it... like .. not on the list.to be able to narrow things down to a diagnosis.i hope i helped you alittle..i need help too,i cant tell fibro. apart from neuropathy even though i looked it up.ughhh.pain is horrible..good luck OH .can someone please tell me the difference between a neurologist and a rheumatologist?? i have 2 neuro's and now a 3rd far away for my memory...
Last edited by jamieann123; 01-25-2013 at 02:10 PM.
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
Well I just got back from the Dr(Urologist) and what did he say. I don't know why you are hurting but I am going to give you a medicine to try. He said it's new and you are the first person I have given it to. It's called Myrbetriq. Has anyone heard of it. He says his parteners have given it to people and it has been successful. We will see. Yep, another pill. That makes 10 in the morning time and 7 at night.
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav
First of all casico, I realize your sinuses are bad but I think you are taking too many antibiotics. Try to stop them all because if you take them all the time, they will never work for you. Check out your surroundings...like is there any wetness in the house, mold etc. Maybe your house was just painted. It certainly can be those. The sore throat is probably from post nasal drip and that can surely make it hurt. Any new detergents, soaps....has the weather changed drastically. Check all those things out and see if something comes up. A rheumotologist will determine if you have fibro. I've had it for years but was never diagnosed until last March, along with an autoimmune disease. My sinuses always bothered me for years and I received shots also but stopped after several years. When the barometer or something like that changes, my head kills me, nose is leaky. I do hope you get to the bottom of this soon because bad days really suck.
Re: I need to talk to someone who doesn't say it's "in my head" help please? Do I hav 
