23yr old with many chronic pain conditions, one 'mystery' one...

[tom21]

To summarize briefly, I am 23 and for the past couple years have been having worsening chronic pain. I have diagnosed CTS (Carpal Tunnel), TTS (Tarsal Tunnel Syndrome), PTSD and a mystery disease so far since doctor's have not taken it very seriously to diagnose. I am on disability so I have medicaid and it doesn't pay much so I find the care I get at the hospital is unfortunately horrible. Most Dr.s just don't believe someone as young as me can get bad diseases or they spend 5min looking at me b/c they aren't getting paid enough. Anyway, I have a long story but let me try to sum up the main stuff:

Symptoms:
-Severe muscle spasms all through my neck and (mostly) upper back. Also in arms and lower back though. These are not controlled/calmed even with muscle relaxant medication like Flexeril.

-Chronic fatigue (really bad, I have no energy most of the time and if I do too much I start to get dilerious from the exhaustion)

-Strong sensitivity to loud noise,crowds,strong light,hard surfaces,stress,etc. Dr. says this is called 'hyperasthesia'

-Severe 'stiffness' in back/neck/body when lying or sitting for a long time (i.e. watching a movie is painful)

-Sharp stabbing pains in back that are aggrivated by turning head far to the left or right, and by extending/stretching arms

-Sore pains in lower back and knees, elbows, etc.

-Burning and pulling sensation down my arms into fingers when extending them all the way out.

-Minor insomnia (mostly from pain in neck/back)

-Very low concentration


Some of my doctors say this is fibromyalgia, another says it could be stiffman syndrome, another says chronic regional pain disorder, and another says it could be something in my spine (trying to get MRI for that). X-rays on my neck came up positive for muscle spasms. I've been doing acupuncture every week, some very light yoga, and other eastern medicine practices, eating healthy, and trying to stay positive/happy.

I take a multi-vitamin every morning and ultram/tramodol for the pain every day and often Norco/vicodin though this does not work well for the pain so my Dr. is giving me Kadian to try. I also tried Flexeril/Cyclobenzaprine for pain but this does very little if anything. Anti-inflammatories also do pretty much nothing. I have 2 CTS releases and I am waiting to get TTS release surgery. But I prefer to solve things other ways however, not much has helped and all symptoms continue to get worse as the months wear on.

Anyway, if anyone has any advice/diagnosis ideas/suggestions for medications, daily life activity/relaxation suggestions or anything of that sort I could really use the help. I don't have family to help out with this stuff so I'm kind of dealing with it all on my own.
Tom

[Rrae]

Hi Tom,
Wow - you are way too young to have to be dealing with all this!! I doubt i have much to offer in the way of you finding medical answers, as i am in my own battle of 5 years and have YET to have a doctor actually sit down with me and determine to get to the end of my ordeal. !! My heart goes out to u, especially seeing that it is obvious u are trying everything in your power to get better...no family support.....and the Medicaid....ugh. Unfortunately, they don't pay very well. BUT do NOT allow yourself to feel inadequate because of it. Your medical needs are just as important as the richest person in the world. I happened across your post here as i was looking for responses to mine. I just want to give you some humble support and to share with you that i am new here too. This is a wonderful forum full of people who truly care and share. Don't be discouraged if you don't get replies right away ok.....sometimes it takes awhile for the real knowledgeable ones to see your post, but most certainly you WILL begin to get good advice.... if u haven't heard anything in the next day or so, try starting a new thread.....just don't give up ok. you are important and you WILL get thru this!
Meanwhile, you have my prayers and best wishes...
Rae

PS Have u had your thyroid checked? That was one of the first things i found out that was causing alot of my symptoms.
Once i had the diagnosis of hyPOthyroidism, i was able to get that under control and go from there. It's amazing how many things the thyroid is responsible for. B4 you start getting alot of expensive diagnostic tests done, make sure they have addressed the simple, most obvious ones!

[tom21]

Hi Rrae,
Thank you for your compassionate response. and thank you for letting me know more about what I can expect in this forum :) Yeah, I get those feelings of inadequacy sometimes...it gets really hard (as I'm sure you know) when doctor after doctor doesn't take you seriously simply because medicaid doesn't pay them enough to. and of course all the other stuff that comes with being disabled, like fighting with roommates over simple accommodations :/ but I'm a survivor and I'll get through this one just like all the other stuff in my life.

I forgot to mention the tests I've had done- thank you for reminding me!
I had a fairly extensive blood test done and everything came out normal including Thyroid. So it isn't that. I'm guessing that when I finally get the MRI on my neck it will come back positive for nerve entrapment(s), being that I have 4 already in other parts of my body this would make sense to account for some of the pain. but other than that I don't know any other kinds of tests that there are for this stuff...other than an EMG (would have to be after MRI) for more nerve checking and somebody recommended a sleep test. But the later is extremely costly so I'm not even going to try asking for that one. As it is my Dr. won't even give me physical therapy for the pain...because "the county doesn't have the budget for that." What a load of crap. They have a brand new multi-million dollar police station with all the bells and whistles but they can't pay for basic medical care. It makes me so angry...

Anyway, thanks again for the reply, hopefully someone with some knowledge on this kind of stuff will shed some light later. I can say for my part that my friends with fibro do share a lot in common with me and we tend to complain about all the same stuff...but I'm not exactly excited about getting that diagnosis :/
Tom

[Naominjw]

We were told for years my daughter's thyroid was fine. Well... yes... that was accurate but her thyroid HORMONE levels were not normal because what they were measuring was not enough. Her low thyroid levels actually were hypothalamic-pituitary and not from an abnormal thyroid gland.

Her symptoms too qualified for fibromyalgia and chronic fatigue syndrome which are just more labels for symptoms without saying what the cause is. A doctor when she was 16 finally ran extensive testing including bone density and intestinal absorption, and another sent her for a sleep study. All 3 were abnormal. Among other things, she has Celiac.

She does see a chiropractor regularly, was in physical therapy, exercises religiously and does a lot of Yoga - some of which they taught her (the advanced stuff) in PT. And of course, she takes hormones and had dietary changes, and takes supplements.

[tom21]

wow, Naominjw, thank you for your post. That is some really helpful information. Can I ask you what you did to get the extra testing done? Was there a different kind of specialist you saw or did you just keep changing doctors until you found one that took the conditions seriously?

I know what you mean about the names...they really are mostly cop-outs for doing extra testing or research usually because they don't want to spend the money :/

Is she doing much better now that you found the problem and that she takes supplements and things? Does she have to take daily really strong pain medications?

at least this gives me some clues into what I can ask for, thank you.
Tom

[Sandel]

Hi Tom,
I have complex regional pain syndrome and it sounds like you have alot of those symptoms.. I am interested in signs that you can actualy see.

* have you noticed any color changes in your effected areas, comes and goes.. red to bluish/purple or a white/blanshing look?

* do you get swelling in your limbs at times?

* do your limbs or effected areas get cold?

* do your limbs or effected areas get hot?

* does your body hair or nails grow thick or riged/ or hair thin and nails cracked.

* does your skin shine in some areas? (thin and shiney)

It is a condition of contradictions as you can see and you certainly don't need to have all these signs, only a few.

Another symptom that you feel that alot of us get is alydonia, when a breeze or the brush of clothing actualy hurts.

ALL of your symptoms and both carpal tunnel and tarsal tunnel diagnosis are symptoms of complex regional pain syndrome.

I hope I am wrong Tom.. painless hugs,
Sandra

[tom21]

nope, I don't have any of those symptoms Sandel.... one of the things that drives me crazy about what I have is that there are no visible signs. This is what has given me such a hard time with doctors because (typical of fibro and non-visible chronic pain) many are prone to believe it is all in your head, which is very, very sad and a cruel cop-out to treating the pain.

Fortunately (or unfortunately) I have muscle spasms all over my body which are very obvious to any trained person to spot/feel. My acupuncturist was amazed at how tight all the muscles are in my neck and upper back.

But the only thing that might be even remotely considered as a visible symptom is my shaking...I tend to shake constantly in my hands especially but only very little so you can only see it when I hold my hand out or try to write something.

I forgot to mention one other symptom that's also readable is my heart palpitations. I have a very fast and inconsistent heartbeat pretty much all the time. This can't really be noticed unless someone feels my pulse though.
Thank you for shedding some more light on CRPS.
Tom

[Sandel]

Hi Tom
So??
The things you just mentioned are also RSD/CRPS signs and symptoms as well, and the other signs are some that may show up at difrent times expecialy depending on how long you have had the condition ect..
I wish you luck in your search Tom.. pace yourself, take vitamin C.. and if ice hurts plese DO NOT USE IT!
Surgery's tend to make RSD/CRPS worse as well.

painless hugs bud,
Sandra

Any questions ask away.

[tom21]

Thanks for the reply Sandra. How/why does surgery make it worse? I noticed my condition has worsened since my CTS surgeries, but it wasn't until a few months after that it took a really heavy downturn.
Are there any medications that have helped with the condition much? So far everything I've tried has been pretty unhelpful. Vicodin/Norco, Ultram, Cyclobenzaprine, Nortryptillyne, Oxy Cotton do very little for the pain... :/

[Sandel]

Hi Tom heres a link that will give tou some more information on Surgery's.

WHAT IS WRONG WITH OPERATING FOR CARPAL TUNNEL SYNDROME, TARSAL TUNNEL SYNDROME OR THORACIC OUTLET SYNDROME IN RSD?

http://www.rsdrx.com/rsdpuz4.0/puz_67.htm

Happens alot actualy.. at some stage RSD will usualy look just like carpaltunnel and tarsaltunnel syndrome, some people keep getting more and more surgerys to try fix it and they end up REALY bad.

As for meds they like to give us an assortment for the various symptoms.

I take:
Baclofen and flexeril for the cramping and muscle spasms.
Trazadone for the zaping buzzing nerve pain and to help sleep.
Topirimate to help stop the burning pain and skull cramps. (some take neurontin/gabipentin or lyrica but they don't help the head aches).
Atavan for my heart palpitations and it helps for oversensitivity to sounds and for anxiety.
Citalopram to help with depression and it helps the pain a bit too.
Subcutanious lidocaine infusions every three weeks, helps for about 2.5 weeks
Too much ibuprophen a day.
Rabeprazole to try protect my tummy from all those meds.
Medicinal MJ for nausia, apitite, and pain relief.

That site also has alot of other information, just don't let it scare you too much, there are precautions to take.. NO ICE and try to avoid surgerys. If you must have them there are precautions to take.. that website and others like it will tell you.. as well there are medical articals avaliable to read on RSD that can help you and your doctor, I had to find the information and educate my doctor because it is all so new information and this is quite rare.. well not as much as some think it is just underdiagnosed aparently they are now saying.

[tom21]

hey sandel thank you for all the detailed information. I am taking some of those meds but definitely could use some of the others and will have to do research on them. I forgot to mention some other symptoms as well:

-Constant dehydration (I *must* carry lots of water with me everywhere I go)

-Semi-frequent headaches (especially with concentration on tasks)

-Ice is very painful on certain parts of my foot (not usually around the main nerves by the ankle though)

-Rapid weight loss (have lost over 10lbs in the past couple months and I eat healthy fat-rich foods and don't exercise...my dr. thinks it could be a high motabalism due to dealing with the chronic pain)

-Small rash on inside of right thigh that went away with athelete's foot cream but continues to come back. Dr. said it's probably just a normal rash becaus 'they happen a lot in that area' but I've never had one there in my life before

-Took another blood test last week and completely blacked out. Could barely walk afterwards. I was told this can be common but has never happened with a blood test before, and I've had 1 in the past year. They took 5 viles of blood though and I hadn't eaten much of anything that day so maybe it is normal. My blood pressure was fine though.

I looked at that article and it was a bit hard to read but one major difference is that his EMGs came up negative whereas all of mine have been very obviously positive.

I'm still highly debating getting the surgery for my TTS and more on the side of getting it than not. Reason why is that all the symptoms and pain continue to get worse and I fear the longer I wait the higher my chances of eventually being crippled are (or very close to it).

I guess I'm just not so sure that it is CRPS either. These symptoms seem to be so common among other chronic illnesses too. fibromyalgia, lyme disease, chronic fatigue syndrome, etc. arg, I wish I knew what was going on with my body.
Thank you for your help Sandel, that medications info will come in handy a lot when talking to my doctors.

[kivlanmaron]

Hi Tom,

it sounds like fibromyalgia to me, at least a lot of your symptoms sound similar to my friends with fibro and many of the people on our forum. I know it's frustrating when it seems like symptoms are being named without talking about the cause of those symptoms. I don't know if you're open to natural and holistic healing methods, but I am a big fan because I've seriously seen some miracles worked by a wonderful friend of mine who also happens to be a doctor. His name is Dr. Howard G. Groshell, Jr and he lives in Florida but there is a great website that talks all about the amazing things he has done with his fibro patients over the years. Most of his patients have tried every medication under the sun and still haven't found relief. Your post made me think of him b/c he is all about finding the CAUSE, the root of the problem, instead of just numbing the symptoms. If you want some inspiration check out the story of one patient he helped - still continues to amaze me. its at http://fibrofreelife.com/new-treatment/. And please join us on the social forum, there are some really wonderful people - and men! - who would love to 'meet' you. I hope you're feeling ok today.

[tom21]

Hey guys, thanks for the care again- this forum has been so much nicer than the others I've tried.

I think I got a BIG clue today...I noticed some large spots on my back. I took pictures:
http://i888.photobucket.com/albums/ac86/tom21pain/100_4008.jpg
http://i888.photobucket.com/albums/ac86/tom21pain/100_4007.jpg
http://i888.photobucket.com/albums/ac86/tom21pain/100_4006.jpg

I searched around google for something that would match, and it seems close visually to something called an "Annular Lesion"
This picture (http://images.google.com/imgres?imgurl=http://www.scielo.br/img/revistas/abd/v80n2/en_a08fig02.jpg&imgrefurl=http://www.scielo.br/scielo.php%3Fpid%3DS0365-05962005000200008%26script%3Dsci_arttext%26tlng%3D en&usg=__1wQ8CGhZbVoruC5Slmih2FCuHWs=&h=318&w=374&sz=23&hl=en&start=6&um=1&tbnid=UhnUC4DcVp1RUM:&tbnh=104&tbnw=122&prev=/images%3Fq%3DAnnular%2Blesion%26hl%3Den%26safe%3Do ff%26sa%3DN%26um%3D1) seemed fairly similar.

Reading that page it looks like that is a sign of Lyme Disease, which I had read was also very similar to fibromyalgia, chronic fatigue syndrome, etc.

WELL, my ex girlfriend had lyme disease. but from what I read it was only transmitted from ticks and "officially" it cannot be transmitted sexually.
Then I saw this:
http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/20247-lymedisease-and****

and now I'm starting to feel pretty sure it's lyme and it was transmitted sexually. I dated her last year which is pretty much exactly when the symptoms started to gradually emerge....and that would explain why they have progressed and gotten worse despite all my best efforts.

Anyway, if anyone has thoughts on this I'd much appreciate it. I'm going to try and get an appointment with my Dr. ASAP to talk about this stuff and show these spots. I had mentioned to my doctors before about my ex having lyme but that seemed to be a non issue to them as well (which was also why I ignored it).

Thank you so much for your support here :)

[kivlanmaron]

I have a friend of a friend who suffers from Lyme...I am so sorry. Have they absolutely confirmed that that's what it is???

Do the doctors say it absolutely can't be transmitted sexually? I'm going to ask my friend and see what he says...he has had it for over ten years so I'm sure he has to deal with it in his relationships....see what I can find out....

Kivlan

[tom21]

thanks kivlan,
I definitely dont know for sure if thats it, just entertaining the possibility with the limited info I have. going to run some more tests soon when i get a new doctor.

i do feel stupid now about the spots though, turns out they were bruises from cupping @ acupuncture. Still, my symptoms are telling of lyme i think in a lot of ways and if it can be sexually transmitted by any degree it is something to look into thoroughly..
let me know what you come up with :)
Tom