dont know what to do

[inpain31]

I am 31 years old and i have been having pain since 2009 it started in my right leg and in the last year and a half has moved to my whole body i have been to the doctors and for months they poked and xrayed and mri me. but that was just for the leg. well i went to the doctor this past november and told the doctor my left arm, stomach neck and face were hurting me pretty bad he checked me out and then told me iwas to young to have these symptoms and it was just probably gastrintestinal problem so he gave me percocet and sent me on my way. well the pain is worse now and i went to the er two days ago and they just checked my shoulder andnothing else and told me it was nothing the doctor didnt even come back in to talk to me and they gave me valium and motrin and sent me home i dont care about the pain meds i just want to know whats wrong with me and for this to go away. i have no insurance and am not sure what to do about this it hurt so bad sometimes and i am always so tired and i get dizzy and nauseous and i get thee worst head aches every. sometimes i just want togive up on figuring out what wrong with me. but i just cant live like this anymore i am so miserable and people just dont understand so if there is anyone out there with these same problems iwould appreciat some advice so much all this pain is to much to handle and id like to know what some of you have done to get better.

[teadrinker]

You are not "too young" to have these symptoms! My pain started in my mid-thirties too.

i'm guessing from your comment about not having insurance and going to the ER that you don't live in the UK, but you are not alone. It's particularly frustrating when you don't know what's causing the pain.

Sometimes you have to see several doctors and try a lot of things in order to get anywhere. Keeping a diary of your symptoms might give the doctors and you a few more clues as to what's going on.

In the meantime, have a look at some of the self-management tips on this site. Getting the right medication is important but it is only a part of dealing with the pain. Please try to get some help if you are feeling really low.

[inpain31]

It is very frustrating im really not sure of how to feel or deal with it. i Have been thru alot of doctors medications and stopped cause of the no insurance thing. and you are right i am from the united states. and if youu dont have insurance they really dont do a whole lot. I will take your advice on the self managment tips. i have tried a couple things myself but they dont seem to work at all. i've tried to get help but no one will help me i feel like no one takes me serious like i am making this all up. i do hide the pain alot because i have to work and i have kids and i just dont want people to worry about me.

[hamble99b]

don't give up. you moved on giant steps by joining this group and you'll never be alone in this now. keeping a diary is a good idea, sending you a virtual hug, sandra

[Jane-Martin]

Hi, have you seen a Rhumatologist? You could have Lupus. Take a look at that sight and see if you can recognise your symptoms. Also try the Hughes Syndrome Foundation site. Auto immune problems can cause great pain and headaches are common. If you can recognise yourself from the list of symptons. Then you can ask on the supprt groups on here which doctor to see. Thinking of you. Jane

[inpain31]

Thank you all for your comments and advice it feels good to know people know what i am going thru and i can talk to bout this i really appreciate this. Sending hugs right back thank you sandra99b. Jane no i have not seen Rhumatologist ve only seen regular doctors for this but i will look into that also.and i will definetly check the symptoms and lookinto the hughes foundation. Again thank you all very much

[Londoner]

Hi - you are not alone and, unfortunately, not too young! Pain in my left leg began in late 2009 following a minor sporting injury. I was 29 and very active, pursuing a career and busyi social life. I'm now 33 and have pain in both legs that severely limits my mobility and independence.

you should definitely get a referral to a specialist doctor. I'm guessing you live in the US where there are a number chronic pain organisations. Look them up on google and them may be able to help with things like local support groups, getting the right medical care etc. There are a number of support groups for pain sufferers on Facebook too, which I find helpful

good luck!

[inpain31 in reply to Londoner]

I know exactly how you feel. i have pain in both legs and get wokin up in the middle of the night cause one of them is stiff and cant move it.. But i push myself to still get up and work everyday its hard sometimes....I have never thought of looking those up i've just looked up doctors that will go based on income. Thank you for the tip. I will definetly look into that. I really appreiciate your help

[Londoner]

no worries! it took me over 3 years before i though of looking for online communities + support groups - wish I'd thought of that years ago! feel free to ask if you have any more questions...

[inpain31 in reply to Londoner]

I do have another question for you.. How did you get loved ones to understand what you are going thru and that the pain is real?

[nedd in reply to inpain31]

Wishing you luck in your search for a diagnoses. Feeling the doubt of others for me has been so depressing. And when people tell me it's all in the mind I either want to give them a black eye or howl. I offer people a go with my tens machine and that soon shuts them up. Or at the very least they have to ask me to take it off. Not so easy for them to grin and bear it when they are on the receiving end. It always always makes me feel a bit better.

[inpain31 in reply to nedd]

thank you. I knw the depressing feeling all to well. ihave been told its all in my mind to many times n its nerveracking. I have tried to explain to people that its not something id make up.. Pain is not a joke especially for people who live with it every day like we do. It would be nice to just have people shut up and listen but they dont they want a doctors diagnosis then they beleive but i have yet to get one. im sorry i know this is totally off the ur comment but its nice to vent and have someone understand. I just wish i could snap my fingers n it would all go away for everyone.

[Hidden]

Try aromatherapy for relaxation. It sounds like your are pretty anxious all the time. You can do it yourself with candles and bath oils. Sit or lie down and breath in the aromas.

As for getting family to understand? I've always found that friends are better at understanding and not questioning as they are one step further back. Part of it is that family don't want to accept that you have changed, they are grieving for the you that used to be and, just like us, they have to get used to the idea that that you have something that can't be fixed quickly, if at all. If its extreme then you could ask your family to go with you to appointments. Then they get a chance to ask any questions they may have.

Also try a sports physio. They are very good at finding the origin of pain and will work at removing pain caused by compensation to get to the root. This may take a few months of treatments or exercises.

Other than that, just doing the rounds of alternative therapies may help. Someone might recognize a symptom or group of symptoms and can point you in the right direction. Unfortunately when it comes to pain, Drs are not always the best people to ask.

[superannie]

Hi funny you mentioned that family don,t want to accept that you are not the person you used to be. They really just want all of it to go away and by a miracle the old you is back! A bigger problem if you were the main inspirer and organiser of the family! Once I realised what my family are dealing with, I am much better at understanding their point of view. Mind you, it does,nt help with the pain!!! But I will get there! Am getting good at disappearing for a few minutes, have a quick cry or rage at the world inside my head, then come back as if noithing has happened! If they only heard the language back there in the kitchen! Hang in there.

[Hidden]

I have a constant battle with my wider family - thoughtless activities planned, lack of understanding that pain can change suddenly and for no reason which means a plan B needs to be in place, expectations beyond my ability, no concept of pacing or its benefits to me, no concept that activity causes damage, which causes pain, which causes inactivity, which causes damage, which causes pain to infinity and beyond.

I've given up explaining, and just refuse if I know something is going to make me too bad to cope with. They think I'm being miserable and want to control the situation, but if I don't control the situation and do things in a way my body won't complain too much, then I'm not controlling my pain.

My immediate family joke about my exceptionally slow speed of doing things, but they let me get on and do things the best way for me.

[chilli50]

Hi

I'm not a doctor or anything but it sounds to me like it could possibly be fibromyalgia. I suffer with this myself qnd the symptoms you describe sound pretty similar to mine. Fm can't be diagnosed by a simple test and is usually diagnosed when other illnesses have been ruled out. Fm can also be called soft tissue arthritis as it is carachterised by pain in the muscles, tendons and ligaments in the body and also fatigue which is a completely different feeling to normal tiredness. Concentration and memory problems are some other symptoms of fm, although there are quite a few illnesses, etc that are associated with fm.

I am on another formu on this site which is for sufferers of fm. If you go to the top of the page and click on "my communities" then scroll down a bit, you will see it. Have a look around the forum and read some blogs to see if you recognize any symptoms, it has lots of information on there that will hopefully be useful to you. Ask questions to help clarify things, even the strangest symptoms can be found with fm and you are sure to get an answer, although it may take a little time sometimes lol. If you are diagnosed with fm, it will mean changes to your life but I've found that in a way it's been a positive thing for me, as it it literally has made me "slow down and smell the roses" so to speak

I hope you get the help you need soon, being in pain all the time is awful and the real bone deep tiredness can make it feel a whole lot worse!

Love and and gentle huggles

Chilli xxx