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21 and full body pain, getting close to loosing my fing mind here.

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Posted 7/17/2012 10:24 PM (GMT 0)
Hey guys and gals! New to the forum but anything but new to pain. I am 21 years young and suffering from a undiagnosed problem causing moderate to severe pain on a daily basis, never a week with one day of no pain.

It goes from headaches, to full face pain and jaw pain, down the back of my neck, my shoulders mainly my left one, my back and right down my legs to my ankles. You can imagine the mobility issues this has caused me, and has resulted in a 4 week sickline which i was hoping to not have to take the full time off and go back to work, yet almost 3 weeks into it i still cant return to work and infact its just got worse.

The 'doctors' i go and see, plural because i am trying to find a doctor with empathy and that understands that chronic pain is not something that i can shrug off (especially with a sore shoulder!). It has effected a lot more than my physical well being, my mental health is messed up from it, i cant think straight for the constant and i mean CONSTANT pain that im CONSTANTLY trying to not think about, i've lost contact with friends out of being so awkward to talk to because im non stop thinking about the pain and the symptoms the pain causes.

Without turning this into my life story I just want/need some advice on where to go from here, it has been ongoing for at least 2 years now and hasnt got any better - quite the contrary actually. What should I do? My doctors arent helping and in TWO YEARS of going to see them i have had not so much as an xray, all they have done is take bloods a few times, tell me its in my head and prod my back half heartedly.

Thanks a LOT for reading and replying, Paul.
Posted 7/17/2012 10:49 PM (GMT 0)
hey, how are you? i was young when i started this game, 23 i think. all you have described i have been through it to a tee. fortunately i have a easy to diagnosis problem in my spine. the 2 things i would say are; keep trying doctors until you find one that treats you as a whole person and with some compassion. second: read dr. forest tennant's "the intractable pain patient's handbook for survival", it is impressive. i could only guess at your Dx but in the long run you need management of chronic pain. maybe split your pain control doctor with another one who is a great diagnostician like a rheumatologist, neurologist, some internal medicine doctors ect. anyway i wish you the best and it will get better!
Posted 7/17/2012 10:58 PM (GMT 0)
Thanks a lot for your hasty reply spinal soldier, do you get jerking and stuff, like twitching from the pain you get? I used to get shaking in my hands mainly when I held a mug or anything with noticeable weight.

Even my face is sore today, I just want to know what it is :(

I spoke to someone today who recommended a pain specialist if the doctors aren't helping me, which is something im definitely going to do, i'll try anything! Its took up so much of my life that i want to help others with this/any kind of chronic pain and i want to get to a level where i can do charity work for people. Starting off with wearing a pain ribbon to raise awareness.

Thanks once again for your reply and ill get reading that book, like i said ill try anything!
Posted 7/18/2012 12:01 AM (GMT 0)
Hi PPP
Welcome to our cp forum. Glad you found us but sorry you are having so much pain. You will find the members here very caring and understanding with a wealth of knowledge.
What doctors have you seen so far? what meds or treatments have you done? With your jaw, face, neck, shoulder pain it makes me think of perhaps a tmj disorder. You could get this checked out at an orthodontist who specializes in tmj disorders or see a neuromuscular dentist. You could try a physio therapist who specializes in head, neck and jaw, also massage or chiropractic could help. Those are some of the things i have tried as i had the symptoms you mention.

I hope you will keep posting with us and let us know how you are doing.

Suzane
Posted 7/18/2012 12:56 AM (GMT 0)
Hello all,
I too suffer from chronic fatigue, pain all over, 28. tons of tests and specialist. no help... tons of prescriptions.. no help?
but recently I have been thinking it is my hormones in over production and goin straight to my liver. I have a lump via under the right rib and just got back from gastro doc. small inflamation and hiatial hernia result, and yet i have no heart burn..? mostly pain. fatigue and tired and sleepless. my regular doc says it may be liver too. havent got the hormone thing tested just yet. tryd a hormonal formula thats seeming to do the trick but if i miss a day of these supplements im back on crash course. I take sta-energized for energy and it gets me through work and the hormonal supplements help me sleep better. the gastro put me on Carafate for my stomach hiatial hernia problem. The company is called sta-natural chemical free supplements. just throwing that out there if your overwhelmed and searching for answers like me. The herbs help me. my lump feels smaller too. but the chronic fatigue i am still battling.. These are the tests I have had-
ct abdoman
x-rays all over
endoscopy throat and stomach
gall bladder ultrasound
besides the carafate. the supplements have helped me deal with loss of energy and sore weakness throughout my body. You can message me on here or email me if you have any new ideas or tests i am missing.
Thanks and God Bless
Nancy m.
Posted 7/18/2012 3:19 AM (GMT 0)
Hello Nancy!

We welcome you to our CP forum…however you are really hijacking another members thread…plus we would prefer that you start your own post, as this will allow member to welcome you to the forum.

Please take a moment and post a new introduction of yourself if you would please. wink

SE wink
Posted 7/18/2012 6:41 AM (GMT 0)
Sounds like it cold ve trigeminal neuralgia. My best friend has this. Talk to your doctors and mention it, unfortunately there is no definitve test or cure, but some meds can make you feel better.
Take Care
Posted 7/18/2012 10:25 PM (GMT 0)
Thanks for all the replies, I'll definitely be kicking around the forum, to get help and help as much as I can on the good days!

Meds ive been on are Co-codamol, Tramadol, Amitryptiline, Buspar... and all individually, the only one that helped me - tramadol, was given in one instance. So i was basically shown how it feels to have little pain for a while then they took it off me saying 'i shouldnt be on all those painkillers'.


It was 200mg Tramadol extended release, for pain.. how is someone that is in pain not meant to be on painkillers?
As far as treatments go i have been to talk to psychotherapists about anxiety that i have, but they never listen when i say i dont have anxiety in regards to talking to people anymore, i just get social anxiety regarding how i look - im not a bad looking guy atleast in all my depression i still know that - i just have back spasms (doctor said my whole back is one big spasm) and physical symptoms from the pain that doesnt allow my body to relax.

Ive got a 'wellbeing' meeting in work tomorrow regarding my sickline and im not looking forward to it at all.
Posted 7/19/2012 4:15 AM (GMT 0)
i have thought about doing volunteer work myself recently to help fill in some of my time with something constructive. i do have spasming, twitching, but my current doctor diagnosed me with a "benign resting tremor" from years of pain, you may have the same thing but you have quite a few global far ranging symptoms that can fit in with multiple auto-immune disorders ex:fibromyalgia ect. so you must get to a doctor who deals with this and nothing else. until you have a solid diagnosis you cannot even guess at how to reduce your pain. you need to get the phone book out and look for the neurologist, rheumatologist, and internal medicine specialist and it is a gamble but you will come across a good one and be brutally honest, like, "i have to take 10 percocet a day not 3 to even take an edge off my pain", (just an example) but they must know were your at. have a good evening and get some doctors numbers. there is a whole different story as to how to answer the question "what do you need to be seen for and why does a 21 year old need a specialty physician? you have good answers, sometimes it's hard to get there attention.
Posted 7/19/2012 6:48 AM (GMT 0)
Hey Paul...

Welcome to the board.... but I'm sorry for all you are going through; I really am. Having chronic pain... especially undiagnosed AND being so young... :(

I would recommend trying to get to a Pain Management (PM) doctor. It's taken many of us here - many attempts to find the "right", empathetic doctor. All doctors have a certain slant on treating chronic pain... but if you've made several attempts w/ many doctors - it may be time to find a good PM doc. My other thought is going to see a rheumatologist, as mentioned before me.

Many of us, too, suffer from anxiety or depression related to our chronic health/pain issues. It's a really common thing (unfortunately). My thoughts would be that once you find a doctor to appropriately diagnose and treat the pain you are having.... your anxiety should lessen some. If not, seeking appropriate (and empathetic) treatment for this is another thing you can do.

There are many wonderful people here on the board. Hope to see you posting... and I wish you lots of luck w/ finding a good doctor to help you out.
--Tina
Posted 7/19/2012 11:21 AM (GMT 0)
Thanks Tina and SE! Im glad my answers have been on point as i am not exaggerating when i say its taking a serious toll on my mental health. Mainly feelings of my mind racing at 1m miles an hour, due to constantly trying to keep a calm frame of mind when i am in so much pain.

Sometimes i think that just because i bottle it all up and dont go into the doctors office screaming and crying they simply underestimate my pain. So yeah I am going to seek out the specialists, and maybe even get some private healthcare. Another hurdle to jump as I know i'll be paid a measly 380ish to last me the month so I hope private healthcare isn't TOO expensive... but then again you cant put a price on health. I have even had people say to me 'I know this guy that sells pain medication if you want his number' and declined it... not going to lie the temptation is overwhelming but i dont want to be taking something thats not being monitored closely, and i am done with drugs (previous Cannabis use but no, that did not cause my pain as the doctors have tried to make out, on the contrary it helps when i smoke, but i have quit everything so much as coffee and am trying to live a healthy lifestyle).

Todays goal; find a Pain Management doctor and make an appointment!
Posted 7/19/2012 10:09 PM (GMT 0)
My pain is REALLY bad at the moment. I really can't cope with this anymore.

I have spoken to family, mainly my Dad who is a nurse and agrees with me that the doctors I have been seeing are hopeless. So I am going to go and see the lead doctor tomorrow (the doctors I have all work for him in his practice) and relay my problems to him. I REALLY hope he helps me when it comes to pain management, I will be making it clear to him that it is something I need to live any form of life beyond just existing. That's really all I am doing just now.

Fingers crossed and will update tomorrow - glad I have somewhere to vent.
Posted 7/19/2012 10:29 PM (GMT 0)
Paul,

Wishing you luck tomorrow. Just be really open and honest... and advocate for yourself. Let him know how this is affecting you physically, mentally, your quality of life, etc.

Keep us updated.. hang in there til tomorrow :)

--Tina
Posted 7/19/2012 10:36 PM (GMT 0)
I just wanted to post and say hello...I'm sorry you are having such a hard time right now:(

Does your Dad have any recommendatins for Drs. to see? Hopefully your appt. with the lead Dr. will go well tomorrow. Is your Dad going with you? It may be good to have someone else who can talk with the Dr. to say how much you are hurting..

A suggestion for talking with the Drs. is to just focus on where your pain is. What type of pain it is (burning, stabbing, throbbing, aching..etc.) As well as talk about things you are not able to do because of the pain and when it hurts the most throughout the day..as in what activities make it worse.

Tell them you are looking for a comprehensive program to help you.

This way they know you are not just focusing on medication to treat your pain.

Reading through your posts I may have missed it...but have you been diagnosed with anything specific? And sorry if you've already said...but have they done an MRI or CT scan/X-rays of the areas that are hurting?

And last question...what type of Dr. are you seeing tomorrow...as in what is his speciality? Have you been to a Rheumatologist or a Neurologist?

This is definitely the hardest part when you are trying to find a Dr. who is willing to get to the bottom of what is going on.

And this is probably why some of the Drs. are hesistant to prescribe anything stronger than the Tramadol right now until the figure out what is really going on...

We can certainly empathize with living with chronic pain. It really is difficult. I ended up seeking out counseling for a year after my divorce to talk about that as well as learning how to live with pain.

I wish you luck..Keep us posted on how it goes tomorrow!..
Posted 7/19/2012 10:58 PM (GMT 0)
Yeah I will definitely be posting with the updates tomorrow, hopefully with a big smile on my face and some relief!

I don't have any pain medication, well I have 8/500mg Co-Codamol, and as you can imagine it can't even see the pain never mind help with it.

The doctor is just a standard General Practicioner (sp), I don't know if you have them in America (if you are in America that is haha). But he is very experienced and was my doctor when I was very young, why he isn't still I don't know. At least I feel comfortable talking to him and feel like I should get somewhere tomorrow, I feel like I haven't even been put on the path to getting better yet.

I haven't had anything done apart from getting medications prescribed and changed within 2 weeks, being told that it is in my head and having my back felt by a GPs hand (not a specialist basically). He mentioned that my whole back is one big muscle spasm, I don't know how he can come to that conclusion AND THEN not prescribe me anything for it?

My Dad isn't coming with me tomorrow but I am going to start making a point of going to the doctors every available day if I have to until I get something that will help me. Even if it has to be every darn day.

Will inform you all tomorrow as to how it goes! Thanks for the luck I do need it when it comes to the NHS haha (something u probably have gathered by now is my detest for the NHS :P).
Posted 7/19/2012 11:25 PM (GMT 0)
Yep...I'm in the U.S...:) But I do see from other members that your all's GP's do prescribe and treat a bit differently than our does..

I'm really surprised that they haven't even done any testing to find out what is wrong...

So you are saying not a single X-ray...MRI...blood test...nothing? Just giving you prescriptions?

I would hope that you, and they would want to figure out what is going on first before trying to mask it with medicine...

I will hope for good news tomorrow!!
Posted 7/20/2012 7:38 AM (GMT 0)
Sorry there has been some blood tests done, but no diagnosis from that. Off to the doctors now *fingers crossed* !
Posted 7/20/2012 9:02 AM (GMT 0)
I am a very happy man! The Doctor was very nice and understanding, I feel so relieved from it.

He actually said without me saying as normal that 'You are doing everything you can to better things', I was so happy to get that recognition, I am tired of spending the time I have trying to live a healthy lifestyle and being told 'You need to put action to words' by people that don't know jack.

I was put on Gabapentin, starting at 1 100mg dose at night to help me sleep, and to increase this to two per day, up to three per day if I feel it is necessary. Also was referred to a Rhumetologist (sp) without me having to ask! :D Got bloods taken too although I hated that part! I don't have an issue with needles haha just how they make me feel afterwards, arm is always sore and feeling wierd after it, not so much sore tbh just feeling wierd.

Day 1 of recovery as far as I am concerned!

Paul is one happy guy!
Posted 7/20/2012 9:15 AM (GMT 0)
Hi Paul, and welcome. I'm sorry too that you're in so much pain with not much being done about it.

I might have missed it in all the posts before mine, but something else that might help is to keep a 'Pain Diary'...basically a log of how your pain fluctuates through the day, things that make it better/worse, and so on.

Also- although it's just going to be symptomatic treatment, with your back being 'one big muscle spasm', what about seeing a physio to see if they can identify any particular problem areas or trigger points - and maybe give you some temporary relief?

Very glad that your appointment went well too...hope things improve from here on.

Laura
Posted 7/20/2012 9:53 AM (GMT 0)
Yeah I have an appointment to see the Physio therapist coming up, the doctor said there isn't much harm in going to that until the Rheumatologist appointment arrives. Would you recommend asking for both?

I am just feeling the effects of the Gabapentin that I was given, 100mg ingested as instructed and it has made me feel a lot more relaxed - not completely sedated or anything, I am still in pain but it is a lot more easy to cope with! Like for example I can actually swallow with ease now! Very nice indeed, just feel a lot more relaxed than I did!

:D
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