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chronic unexplained pain

Nov 20, 2014 9:03 PM

For years i have had chronic unexplained pain through out my body and no one believes me

Nov 20, 2014 9:05 PM

Why doesn't anyone believe me

Nov 20, 2014 10:01 PM

Hi just me. I believe you. Mine is chronic and unexplained too. It just "showed up" one day after a day at a water park and from there seems to be spreading through out my body. At first my Dr thought it was bursitis in my shoulder but I kept going back and describing where the pain had traveled to. I kept a journal of pain to show him. Eventually it was diagnosed as fibromyalgia.
Do you trust your Dr? If so maybe consider a journal like I did so you show him/her pain. In addition, ,this app is great for that too! If it is family or friends that don't believe you I get that too. I have a hard time complaining all the time of how much I hurt so I keep it all inside. Then as I lay awake all alone in pain. I come here. There is always someone who understands and believes you. So please know that I believe you and do care.... Very much!

Nov 20, 2014 11:36 PM

I had pain since 2005 and a long list of misdiagnosis. In august of this year I was diagnosed with fibromyalgia when my pain went through the roof and all I could do was cry. Pain is hard for others to understand. Even harder to understand chronic pain. It is a tough road be persistant. See a rheumatologist, in the end that is who figured out my fibromyalgia. I have other symptoms but one hurdle at a time. Don't give up and don't let doctors tell you it is nothing and brush it off. Only you know how you feel.

Apr 16, 2015 11:57 PM

I am in my freshman year of high school and I have had Fibromyalgia since the 6th grade. My doctor refused to diagnose me and refused to recommend me to the rheumatologist so I got a new doctor who sent me over there right away. I was diagnosed February 2014 and have had this for what feels like forever, yet my own father doesn't believe me when I say I hurt for no reason whatsoever. Life is hard and just reading all these conversations help cause I know someone else out there know what I'm going through. My advice is to get to a doctor that believes you when you say you hurt or threaten your doctor into a referral. It worked pretty well for me since it took only a year before I finally got pain relief (massages and recommendations for acupuncture biofeedback and psychotherapy). Remember this: When in doubt yell at the doctor

Apr 17, 2015 2:53 AM

Your account is like so many of us here and so many others I have come across over the years. I have been in pain for so long and they still have no reason. I have gone to a rheumatologist and I have test that suggest that I have an autoimmune disease. But they say nothing is wrong. I have test that come back that show that I have a lot of inflammation. But they say that nothing is wrong. They say it is because I am overweight and I am sure that this really adds to my pain. But that would not make my bloodwork show that my body is inflamed. So my conclusion is that doctors are lazy. I might offend some people here. I am not trying too. I believe in Fibromyalgia but I don't believe many people who claim that they have it really have it. I don't think it is psychiatric. I don't believe it is because I think they want to be sickly. I just think that doctors like to give that title to people when they don't know what is really wrong. When they don't want to look anymore. When they feel they have looked enough. I think they don't go by the clearly defined symptoms such as the trigger points and other things. I think they just want a person to feel like they figured out their problem by giving a name without ruling out everything and setting up visits to specialist.

But I think fibromyalgia is a real disease. Don't get me wrong. I think it use to like TMJ. There was people who really had it, and had it terribly but then if you came in with headaches or a slight click, they they told you, you have TMJ.

So in a novel, I am saying that these people here I don't doubt have fibromyalgia. They must be satisfied with their diagnosis and are able to use some of the relief aids that come from that. But still in bad pain. But make sure you research this disease, because doctors overlook important things by just calling things fibromyalgia. Then they can stop searching.

That is my rant. I say that because according to my doctor, I have fibromyalgia, but I have never been checked for trigger points. I am in pain all over for like an hour or two a day. It feels like I have the influenza. but then it lets up.. I even get a low grade fever.. But then it goes quickly..

So be careful. Please don't be offended my dear friends with Fibromyalgia diagnosis. i have found many people here have a pretty good medical knowledge. I hope you find the help you need.

Apr 17, 2015 10:08 AM

Silent sufferer 09 I am so sorry that you are going through all of this so young. It is not a easy road to live. I am 59 and was diagnosed with Syringomyelia, Syrinx in 2004 I had an anteriordiskectomy on C5,6,7 in which the Syrinx drained after 6 week follow up. I just found out that it has filled back up again as long ago as 2010 after I started using my Neurologist. I was diagnosed with Fibromyalgia in 2006, I hurt my back by twisting as I fell down in a chair bottom then down to the floor causing a herniated disk @L4S1 with a uprooted nerve. I developed type 2 diabetes in 2006 where due to my being grossly over weight had me using 10 units Byetta 2 x a day, 14 units Humalog before each day, and sliding scale, and 50 units of Lantus a day. My liver enzymes were over 1000, my blood sugars out of control due to my weight. I asked my Dr about weight loss surgery, He sent me to a surgeon to talk to him about he told me that if I didn't have surgery that I had about 7 years to live. I had Vertical Gastric Sleeve Surgery on 7/29/2013. I started loosing and lost down to 179 lbs. Then regained about 20 which I am working on now. My Dr.told me Monday I had lost another 8 lbs. I was excited, I'm fixing to use my silver seankers at our gym to be able to use the pool. Sorry for the rant.

Apr 17, 2015 11:02 AM

Weezie, I would kill to lose 179 pounds but after 28 surgeries, and many infections and misery, I just don't want to go through the procedure for fear that I would get sick or an infection. I've been eating clean and gluten free and also lots of fresh veggies and lean protein, greek yogurt, protein bars and about 2-3 liters of water a day. I don't move as much as I should but it's strictly due to pain and exhaustion. I have been out and about every day this week and today it's raining and I'm in agony. However, the good news is I have lost almost 100 pounds. I've gone down 4 jeans sizes and feel better but have a VERY long way to go. Thanks for your info though, it's encouraging. I know that with time and the nice weather coming, I will take more off.

Apr 17, 2015 12:12 PM

Alwayz I think that's great losing 4 pants sizes. I would never push anyone to having weight loss surgery that is each individuals perogitive. I made my decision because the Dr told me that I would be dead in 7 yrs., and all of my health problems that I had. I am taking only 10 units of Lantus as needed which is not very often. I went from a size 3 x to a 16 but am back up to a 16 18 with spandex and denium,l to xl a cording to how it's made. That's why I am going to join the silver sneakers at our gym. To use their pool fo exercises.

Apr 17, 2015 1:14 PM

Justme1108 & Silentsufferer09, I'm sorry you both are so young & suffering. I'm 53 and had a wonderful ly healthy younger life, except for a broken leg & tonsils. I didn't have a perfect family life; by far just the opposite. But there were adults in my life I looked up to and went to for advice or help. They kept me sane. Really! Find a friend, family member, or someone you feel close to, and ask them to go with you to a doc appt if they can.

My medical problems didn't hit until my late 20's, as a result of auto accidents. Its snowballed in the last 5-7 years and there's more issues & medications than I can keep up with. Its up to you to be your best advocate. Keep a list of your symptoms, especially if they're new and unusual. Like right now I've been tracking tremors and extreme imbalance for 2+ months because the cause hasn't been identified. I detail my notes; where I was, what I was doing, how it started, etc. I even videoed several episodes of tremors & showed my docs. Take your notes to your doctor.

And remember that you don't have to suffer alone, in silence. Everyone on this site is experiencing pain of varying types & degrees. But no one is judged or ridiculed, regardless of our different ways of handling our pain. You'll find a lot of support & good advice here. And you never have to feel guilty for ranting, crying or screaming here. But we like laughter too! I'll keep you both in my prayers! 🙏🌼

Apr 17, 2015 8:50 PM

Alwayzinpain I'm proud of you losing that weight keep up the good work And Just me 1108 and
Silantsuffer09 welcome aboard and I'm sorry your in Chronic pain that they don't know why don't give up with trying to find a good dr they don't want to hear the truth and don't believe me either when I get poised and tell them what I know is up with my body. We can only keep strong and keep pushing on cause I'm loving my brain of thought I hate fog headness

Apr 17, 2015 8:51 PM

Should say loss my brain of thought.

Apr 18, 2015 5:32 PM

Profiler I have a similar story with inflammation. The doctor calls it autoimmune phenomenon. My doctor is great and not afraid to admit things. She said doctors don't understand the immune system well enough to know what is going on. It seems to me when you look at fibro it is some sort of autoimmune or autoimmune triggered issue. Most of the people who have it also have other autoimmune issues.

Apr 19, 2015 11:30 AM

That is very true Shammagren. The Ear, Nose, Throat doctor I went to was looking at the paperwork I had to fill out and saw all the diagnosis that I had put on the forms. Well, his first words were "You have all autoimmune issues" It was one of the few times I have had a doctor admit that what was going on in my body had to do with a compromised immune system. That's why we get sick so easily... If anyone has a cold or anything, BAM... I catch it and I usually end up going into pneumonia. It's not an easy life but then again, nobody ever said it was going to be easy.

Apr 19, 2015 1:34 PM

Profiler I am 47 and have been dealing with pain since I could remember, each time I complained I was told to lose weight and walk it off .I was diagnosed in 2000 but my Dr. Forgot to tell me. Just kept giving me pills that didn't work been on every fibro med you can think of .trigger points didn't match on there scale.lost my job which means no insurance at the time.so I just suffered in pain now I get pain killers and because of the law I have to pick up my script they keep pushing my appointment further and further away now I will be with out meds for nine day how much you want to bet they will run a blood test and ask me if I am selling them lol I think it is time for a new doc.and you will go through this over and over again.it is just starting.

Apr 19, 2015 4:50 PM

Hi Mom flyer, don't feel bad I was diagnosed with fibro July 02,13 and disgenrated disc and my doctors just wanted to give me medications after medication until anything didn't work so I just had surgery on 3 12 15 on my L -4-5 and still hurting all over. Just pray about it and let God do his job!

Apr 19, 2015 4:53 PM

It's not the weight mom flyer it's the swelling what they don't know because you can lose the weight and still be in pain

Apr 19, 2015 5:41 PM

I went to my primary last Monday and he couldn't believe that I still had 30 pills left In my prescription from March.I told him that I am trying to not take so much, I worry about my liver, since I have fatty liver disease. I wait until I'm hurting around an 8-9 which I know is stupid to do.,but I push it back since I have my fentynl patch it makes me able to push the pain back until I can't. He still gave me the same at to have refilled. To me that doesn't make sense. You would think he would give me 60 less. He has never questioned me about my medications.

Apr 21, 2015 11:33 AM

My pain management doctor has never questioned the doses of my meds either. I have never had a discrepancy in my urine tests and I have never done anything to give them reason to distrust me. The only help I have is pain management for my meds so why would I take a chance on losing that help??? The whole thing is a nightmare all around.

Apr 21, 2015 2:00 PM

Exactly Alwayz why would anybody that has lived with this pain for so long take the chance on losing it . It's stupid.

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