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machwon

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Joined
Oct 10, 2014
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6
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Undiagnosed
Diagnosis
09/2014
Country
Uni
State
Colorado
Hey everyone- My name is Rex and in the last couple of years my life has seen some...ummm... changes! I don't know how brief or in depth to be but I suppose I should error on the side of "more info is better". Let me start by saying I have seen a local rheumy one time (about a month ago), and she suspected fibromyalgia or a similar (but not permanent pain disorder)- can't remember what it was called though :/. Anyways- I go back for a check-up in about a month. My regular doc thinks I am simply depressed, anxious, sleep deprived and have pain due to my activities (to follow), and has me on Celexa (SSRI) 20mg daily for about 2 months now. Although my mood has slightly improved, nothing else has changed, and in fact the pain seems to have gotten worse. Here we go:

I'm 29, extremely active, always go, go, go, enjoy hiking, fly fishing, and race road & mountain bikes recreationally. I will start two years ago- Life was going perfectly, and then while on a road bike ride while on vacation in Mexico with my dad, I witnessed a taxi run a stop sign, hit, and kill my father on his bike. I have no doubt this psychologically traumatized me. To make it even more tragic- I had just proposed to my (now) wife the night before. What followed was a move from Virginia, back to Colorado to be closer to my mom and to help her keep up the place, find a new job, sell a house, buy a new house, etc. After almost loosing a couple of toes last year in a cold (but not too cold) bike ride- I was diagnosed by my family doc with Raynaud's syndrome (rare in men I guess). Last summer, after our wedding, we found out that I would soon be a father :grin::grin::grin:, and my baby girl Ayen was brought into the world in April of this year. Being a father has been the most profound life experience- I never could have even imagined. We are happily Married, I love my life, wife, daughter, and all the blessings I'm lucky enough to enjoy. It was probably February or March when I REALLY started feeling the symptoms which now plague me almost every single day.

To summarize- Lots of stressful life developments (some terrible, some amazing) in the last two years.

My first symptom that I remember was a painful burn / headache near the top of my neck / base of my skull, and sometimes down my neck. It would come and go but was fairly chronic. This is still my most annoying symptom as it is present on some level almost every day, and most of the time is VERY frustrating and painful- shifting from side to side of the back of my head / neck, and varying in intensity. Sometimes made worse by looking up, down, or side to side.

I have been dead TIRED...all of the time. I am sure some of this comes from being a new father and sleep deprivation, stress, etc. BUT I lack motivation to exercise like I used to (I used to ride 3-4 times a week, now I'm lucky if I get out 2 times). Some days are better than others but this constant fatigue and lethargy just isn't me. Yawning...all...the...TIME.

While riding my bike I would get sensations like I was stung by a bee or wasp on my back or side, only to find there was nothing there- very weird. Additionally, I have been "itchy" all over, especially on arms, shoulders, neck, back

Constant muscle twitching- I always thought this was due to my rigorous cycling...however even with the back-off of riding the twitching continues. Mostly lower limb muscles, however I also get it in my neck, arms, and shoulders.

Sometimes a little dizzy or lightheaded- especially upon standing up (weird).

My butt hurts- seriously though...sitting for a few hours at a time (desk job) never used to irritate my rump like it does now. I have to constantly shift positions...feels like my hind parts are on fire.

The most recent pain / irritation has popped up in the last couple of weeks. A very sharp pain in the middle of my back just to the left of the spine. Also, when I bend over I have a very bad lower back ache- again just to the left of center... weird and VERY painful / annoying.

I wake up several times a night because of back / neck / head pain. So frustrating.

Talk about brain farts. I have been more forgetful, absent minded, and spaced out than ever (that's not saying much)- but it even has my wife worried. I used to be pretty sharp- now I have a hard time concentrating, short term memory is pretty much GONE, and I can be told something and really have no recollection 10 minutes later. What gives?

If I reach up to grab a plate out of the cabinet in the kitchen and catch the shelf lip with the tip of my finger it feels like someone jabbed a screwdriver down my finger...sharp and intense pain for what little happened.


Basically it feels like I aged 20 years in the last 2. I am freaked out because I am a new father and want to be the best I can be for the family, but sometimes I REALLY feel like I am aging to death or something, and I always start fearing the worst (cancer, terminal illness, etc). This is bizarre, and extremely frustrating sine my regular doctor won't take it seriously and was actually upset that I had to get a 2nd opinion to get a referral to a rheumy since she basically refused to simply stating that stress and anxiety, leading to sleep problems, has caused all of these issues. The celexa has only mildly improved my mood, and the pain has gotten worse.

The Rheumy ran all sorts of inflammation tests on me looking for anything like SLE, Sclero, etc. and all came back looking okay- however my Creatine Kinase came back slightly elevated- likely due to my exercise regime she thinks- but will retest next visit. All other blood work looked okay. She did a pressure test on me and I had several sensitive areas- back of head, shoulders, inside of knees, forearms, and thighs.

Can anyone tell me what is going on with my old-man 29 year old body? I always worry something worse like a brain tumor are to blame and have a fear of not being there for my daughter growing up- sometimes I almost WANT it to be Fibro so I stop worrying so much. :( Any help or insights you folks can share- I would be extremely grateful for!
 
Joined
Sep 3, 2014
Messages
24
Reason
DX FIBRO
Diagnosis
09/1990
Country
US
State
CA
It could be any number of things. There are some very good rhumy's who can take blood tests to see if some of UR symptoms are arthritis. There are many different types of arthritis as well as RA & Psa. At least that would be a good start. Rhumy's also specialize in diagnosing FM.

Good luck
 

machwon

New member
Joined
Oct 10, 2014
Messages
6
Reason
Undiagnosed
Diagnosis
09/2014
Country
Uni
State
Colorado
Thanks Shades,

I think my family physician, as well as the rheumy I saw tested for inflammation markers in the blood such as C-reactive proteins and ANA screening and all came back okay which is what led the Rheumy to suspect Fibro as an underlying condition. I just got off the phone with her office and go back a week from today- she wants to do an MRI to rule out MS, and other related neuro disorders so Fibro will be the last one that fits. Wish me luck...this sucks. :/ At this point I just want to KNOW so I can move on and make the best of whatever it is- not knowing is the worst.
 

stardisgate

Active member
Joined
May 26, 2014
Messages
51
Reason
DX FIBRO
Diagnosis
00/0000
Country
USA
State
Arizona
Oh wow. It sounds like you have been through a lot. It sounds like it could be fibro. I have just about everything you have mentioned. It's hard to get by. Especially when you have a fibroflare. For now, I would say, have them to what they can. try the medicine and see if it makes a difference, but give it time.
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
You have a lot different symptoms! It could really be anything, the headaches sound like tension headaches. The itch all over your bosy could be an odd allergy or a sign from your liver or kidneys that you need to get checked soon. You need to get several blood tests done, need to check how well your kidneys, pancreas and liver are working. I doubt you have fibro tho...

By the way, sorry about your dad... that would traumatize anyone! So sorry you had to witness that, no one should!
 

machwon

New member
Joined
Oct 10, 2014
Messages
6
Reason
Undiagnosed
Diagnosis
09/2014
Country
Uni
State
Colorado
Thanks for the feedback folks! I'm hoping for the best no doubt. Should know a lot more Friday after the MRI & Rheumy checkup. My PCP did perform a full comprehensive metabolic panel, as well as check for inflammation markers, blood counts, etc several months ago and everything looked fine. From a blood test perspective I seem to be fine...so why do I feel like I am turning 65 this year? :grin:

Thanks again for all of the words of encouragement and insight everyone!
 

machwon

New member
Joined
Oct 10, 2014
Messages
6
Reason
Undiagnosed
Diagnosis
09/2014
Country
Uni
State
Colorado
One last question- could anyone describe what a flare feels like? I have most of these symptoms (at varying intensities)- MOST days- however, every once in a while for periods up to three days to a week, it seems like I get hit real hard with more severe levels of symptoms. After a week or so it seems like I get a "break" or lessening of the symptoms for a while. Sound sort of like a "flare"? Thanks again!
 

Forgetmenot

Extremely helpful member
Joined
Oct 6, 2014
Messages
1,377
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
A flare is going from feeling ok ish to being in worse pain or tiredness . Like being hit by a bus.
Fibro can be a result of life changing stress like u have been through ,and let me just say how horrid a thing to have to see your father die like that.
Mine started after the break up of my marriage and the death of my brother.everything got a lot worse from that point.fibro doesn't care how fit u are or was how old u are what color u are or where u come from.
Also I get a burning down my neck and top of shoulder . Sorry my post is a bit depressing isn't. Lol btw fibro is always the last thing they say u have. Always takes a long time to get there ,
 

Brismom

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Joined
May 14, 2014
Messages
53
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DX FIBRO
Diagnosis
00/0000
Country
US
State
California
Machwon
I am so sorry about your father and all the stress you have been through. I really related to your post and the symptoms you have had. I have been sick for almost 10 years now. I am an RN and I was basically in the prime of my life and so great at what I did (hospital nursing) when all of a sudden I started having weird symptoms and one thing led to another and I could no longer work which not only devastated me but rendered me broke and having to downsize big time! As a single woman my whole life has been my health for many years now. I would go to the doctor and get all these blood tests and others done and they would say, "the results are fine".Meanwhile I feel like a car with ONE spark plug. I would try and work on the floor and I would start sweating and get dizzy. I wouldn't be able to sleep. My head was so muddled and everything felt surreal. I would suddenly have pain in weird places like my knees would feel like I had been digging ditches. OR my left arm would throb for weeks for no reason. My head felt like I was in a cloud and I couldn't think straight or remember words. The fatigue was terrible and I am not a couch potato so the pain medicine gave me a little energy but it took me hours to get going in the morning. I felt like I had never slept at all, even if I slept 10 hours. Sooooo my most recent symptom is what made me say to myself I am going to get a diagnosis or kill myself trying! The ITCH, I had a little tingly/itch area in the middle of my back that just got bigger and bigger and spread until it was my entire back! AND then the bites and the feeling as if invisible bugs are crawling on me and stinging or biting in random areas like my legs, etc. My eyes got blurry like someone put Vaseline on them. It's the WORST! I thought I was going crazy and everybody says, you have bedbugs or you're allergic to your clothes soap! Well read my current post entitled "Fibro or Lupus?"" I got diagnosed today~ I have LUPUS!Thank you Jesus! At least I know what beast is torturing me! Now I go from here! This battle is not over yet~ and it sucks, but with Gods help, I am going to fight it. I pray you get a diagnosis soon for you and that beautiful family of yours and if you have any questions of me, feel free to ask!
 

cherrygirl

Member
Joined
Sep 8, 2014
Messages
27
Reason
DX FIBRO
Diagnosis
08/2014
Country
AUS
State
VIC
I will warn you, I was on celexa for 8 years and it was great for my depression and some of my anxiety problems BUT I believe I was tensing my muscles on it all the time without realizing it. I was also clenching my jaw very badly in my sleep and constantly had a stiff neck and jaw. I now have severe arthritis in my jaw. I can't say if it's from the meds or not from years of bruxism who knows. I am now off celexa and I know I can live without it.

I have the EXACT same symptoms. I actually found taking Zyrtec (and only this brand for some reason!) Helped a little. Which leads me to believe I could have a hidden food allergy causing my joint pain and that biting feeling, sore itchy skin etc. I don't really get stomach symptoms but it;s still possible to have food allergy without that. It could be gluten related (I haven't been diligent enough to know as it can take a few months to improve). But I do know when I am off gluten for a while I start to feel better and as soon as I have bread or even beer, the itch starts, and my scalp burns and itches. My eyes burn. Could be yeast/gluten :S!? Pay attention to what you eat and how you feel.

I am thinking about trying intermittent fasting to see if that could help. I have so many weddings and this and that coming up it's difficult to avoid all these foods.

Brismom you must be thankful you finally got a diagnosis! I had the lupus test, is that the ANA one? Mine came back negative. Only thing dr could find was Celiac gene. She explained gluten can affect people in different ways (like eyes, skin etc) and not always the GI tract (although if I do eat too much I can't stop going to the bathroom!). I also did have 'speckled pattern' ANA whatever that means, but she couldn't make a definitive diagnosis from it. machwon has your dr done blood tests for autoimmune diseases? Also Celiac gene? Would be interested to see if you have it too.
 

machwon

New member
Joined
Oct 10, 2014
Messages
6
Reason
Undiagnosed
Diagnosis
09/2014
Country
Uni
State
Colorado
Brismom- Wow- I can certainly relate to how you feel. I am so glad you finally got some closure. SLE is certainly tough but it could have been much worse, and after 10 years of struggling I can only imagine how good it must feel to KNOW what you are dealing with now. My MRI and blood work came back- everything for the most part looked good (thank God)- but I do have a herniated disc in my cervical spine...might explain some of the pain and tingles but my Rheumy has diagnosed me with Fibromyalgia / Central Pain Syndrome. She has me starting up a SNRI after I wean off of the SSRI Celexa I am on know to see if it helps with the pain, sleep, fatigue, depression cycle. Best of luck to you with your Lupus treatment and management!
 

machwon

New member
Joined
Oct 10, 2014
Messages
6
Reason
Undiagnosed
Diagnosis
09/2014
Country
Uni
State
Colorado
Cherrygirl- I hear you on the diet! I have had the full workup for autoimmune and everything came back okay- BUT they didn't check for the Celiac gene. Like you, I have tried short periods of gluten free eating / drinking and (it might be the placebo effect) but I thought I felt better. However as an avid beer drinker and home brewer the occasional beer is the hardest thing for me to give up entirely- but it might just have to come to that. My wife and I have been discussing things lately and she really wants to try gluten free so I think we are going to give it a go for a month and see how it goes. I know I am allergic to pretty much anything that grows out of the dirt so additional food allergies are very plausible- I am going to pick up some Zyrtec today and see how it helps. My wal-mart branded 24 hour Loratadine (generic Claritin) doesn't seem to be doing much anymore. Thanks again for all of the kind words folks and best of luck to you all!
 
Joined
Sep 3, 2014
Messages
24
Reason
DX FIBRO
Diagnosis
09/1990
Country
US
State
CA
Hi..
Re: itch from hell..

I have had the itch from hell for yrs it was a horrible bug biting itch some from dry skin the combo of auto immune diseases ..arthritis & psoriasis. For years nothing helped. Nothing OTC anti histamines helped. The Zurtec helps sometimes,it hit all spectrums of histamine release areas in the body that causes itching.
Finally stopped the insane bug sting biting itch. Finally found a prescription Hydroxyzine HCL 5 mg. It hits a different histamine area in the body.
One pill stops the horrific itching. Also keeping ur skin moisturized everyday has helped during the winter. I very seldom get the itching from hell now.

I had been thru all the tests mentioned tests and all the allergy tests, food allergies nothing came back. Vit-D and sunshine helps
In summer.
 

cherrygirl

Member
Joined
Sep 8, 2014
Messages
27
Reason
DX FIBRO
Diagnosis
08/2014
Country
AUS
State
VIC
Supposedly anti hsistamines can help with auto immune disorders too (an allergy, is an immune system disorder anyway right?).

machwon, It's quite possible you have the gene. Apparently 20-30% of the population does. Especially as you've noticed you feel better off it.
if you and your wife both go gluten free that will make it much easier to stick to! My partner eats quite a lot of gluten/wheat and then he'll want me to bake as well, I tried making gf goods and he hated those! It's very difficult to resist lol.

Shame about beer I know, I don't home brew but I do love a good beer and there's always beer around at my house. It's meant to be distilled from the gluten protein but still, I do react every time, some brands worse than others.
You could slowly introduce it back into your diet after the month and see what happens?

I also found the same with loratidine, I had no response.

Shades_of_Idaho hydroxyzine sounds good, my GP was unhelpful saying there was no other anti histamine than the ones OTC, and suggested I take Telfast (which did nothing, then I found Zyrtec).
,
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
Hello and welcome to the forum. I am so sorry to hear about all the sadness you have had in your life, like losing your dad and the other heartbreaking changes in your life. But I am happy for you in regards to your wife and new baby girl. Wishing you the best of luck as time goes on.
You have a great deal of symptoms some of which could be caused by PTSD and depression. It would be very hard to watch your father being killed in such a way without some lasting effects. I would strongly suggest you find someone and get therapy for these conditions. They also could be causing some of the pain and symptoms your experiencing.
A lot of members on the forum including me, have felt that experiences in our lives help to start our fibro condition. Some was from emotional abuse and physical abuse, car accidents and too much stress in our lives. So although, I can not say if you have fibro, based on our own backgrounds it is possible that you do have fibro.
It is good to hear that your doctors are working hard at testing you to find out what is causing your symptoms. Please keep us informed on how that works out.
In the mean time read through the different posts and add your thoughts to others questions, and most of all by reading the posts you will gain lots of knowledge toward coping and managing your condition. For no matter what the illness the coping skills are the most important part of any illness. :)
 
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