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Regular Member

Date Joined Oct 2007
Total Posts : 43
   Posted 10/19/2007 1:53 PM (GMT -6)   
Hello all,

I'm not sure this is the right place for my post, as I don't have a diagnosed condition, but I'm searching for answers/suggestions and you folks seem pretty knowledgable on the subject of pain. To start off, I'm a 23 year old female and have suffered from anxiety/panic for many years. My regular doctor has a habit of writing off every symptom I ever go to him with as anxiety. I find it to be very condescending as he's labeled me as a hypochondriac when I know I'm experiencing very real symptoms. I'm in the process of switching to a new GP but I'm afraid of similar treatment from her.

Now on to my pain. Even when I was little I remember experiencing strange aches and pains that didn't feel like any type of muscle soreness or anything "normal." I would get very achey, especially in my legs (ankles, hips, sides of my knees) and occasionally in my arms as well. When I would try to explain it to my Mom I'd be telling her that "my bones hurt." The doctor chalked it up to growing pains. It always seemed to be much worse if there was any change in my sleeping pattern -- if I didn't sleep in my own bed I'd hurt for a day or two, or if I didn't get at least 8 hours of sleep I'd be in pain. Going to sleepovers where I had to sleep on the floor was the worst, I'd be in so much pain afterward. I also had frequent diarrhea when I was younger. My parents were taking me to the doctor so much that he finally told my parents I was a hypochondriac and was making symptoms up so I wouldn't have to go to school. I was diagnosed with anxiety around this time, and that was blamed for most of my symptoms...although I can't help wondering if feeling so crappy all the time was making me anxious!

The level and frequency of pain was pretty consistent throughout middle and high school. The pain would get much worse when I was over-tired, right before and during my menstrual cycle, and occasionally at random times. I was a runner in high school and getting exercise seemed to help until I was 17 and developed an "injury" that involved a lot of leg pain. I put "injury" in quotes because the doctors couldn't seem to find anything physically wrong with any muscles/tendons/bones/joints. The pain was in my lower back on the right side, directly above my hip, and seemed to radiate down to the outside of my knee and on down to the ankle. It was very, very much so that it would bring me to tears, and I couldn't seem to get comfortable. It was so bad that I couldn't sit still, if that makes sense to anyone. The pain lessened and went away after a while of not running, but whenever I get "flares" of pain, that's usually the first place to start hurting.

Fast-forward to college, and the pain increased and was occurring more frequently. Diarrhea returned with a vengeance, and it seemed there was a connection between the two. I'd wake up in the morning feeling completely achey, and by that afternoon/evening I'd practically be living in the bathroom. I'd usually ache for 2-3 days, with diarrhea lasting for about 12 hours. I'd also be completely fatigued during this time, all I could manage was to lay in bed, popping Ibprofen and Imodium. After one really horrible episode in which I passed out from pain while in the bathroom, my Mom got me into a gastro doc and I had a bunch of GI tests done. I was eventually diagnosed with IBS-D. My doctor said it was probably brought on by anxiety, and that the pain I had was probably due to muscle tension. Considering that I felt like the pain was in my bones and it felt like "shooting pains" (i.e. constant dull aches, with worse pain shooting from shoulder to elbow to wrist, from hip to knee to ankle) I thought that was bull.

Fast-forward again to age 19, and the pain was at its all-time worst. It was constantly there, I was exhausted all the time, and was pretty much at my wits end. I was having muscle spasms and would develop visible knots in my muscles that were like horrible painful cramps. I went back to the doctor who only did one test, which was Lyme, and that came back negative. After a few weeks I discovered I was pregnant and figured that was causing all of the symptoms. I did not carry the child to term, which was a fairly traumatic experience for me, but afterward the pain has remained at a high level with other symptoms cropping up along the way.

The aching, shooting pain is always there in at least a vague form, and I'm usually in pretty moderate to severe pain for 2 or 3 days a week. On those days I'm so exhausted I can barely function. I literally can't seem to keep my eyes open. Taking 600 mg of motrin seems to dull the pain but never completely takes it away. The pain seems to used to stay mostly in my legs and arms, and usually one part of the body would hurt worse than the other. Now it also seems to affect my back, my hands and fingers, feet and toes. I get sharp, shooting pains all the way to my fingernails. In March, my right upper arm started to hurt was like a stinging, burning, tingling, stabbing pain. It hurt to even have my sweater brush up against the skin (I would gasp and tears would come to my eyes when this happened). I went to the doctor (again) and she said it sounded like nerve pain and said perhaps I was coming down with shingles (I've since researched shingles and highly doubt I'd be developing it at 23). She gave me Valtrex and sent me on my way...I didn't even take the Valtrex and of course never developed shingles. After about 2 weeks the pain started to subside, but every once in a while it crops up again and takes me by surprise.

Other random symptoms that might be worth mentioning: My toes feel tingly, as if I have "pins and needles" even when they haven't fallen asleep. This seems to get worse in the heat, and if I take a hot shower my fingers start to tingle and have cold prickling sensations in them. I keep getting a rash that seems to migrate -- it's will appear as a grouping of red, itchy circles (or ovals) that stops itching after a day or two and becomes scaly, darker in color, and lasts for over a week. The bigger circles seem to have smaller bumps, almost like pimples, inside of them. The circles usually leave a mark, almost like a dark scar after the rash has disappeared. Once it's vanished from one site on my body, it crops up in another (so far it's been on both legs in almost the same exact spot on my calves, my right inner thigh, my lower back, my butt cheek, and my right arm). My hair is also falling out. It's not coming out in clumps but is shedding and thinning quite badly, to the point where other people have noticed it.

On top of the IBS diagnosis, I also have Factor V Leiden (a genetic blood clotting disorder) and I am allergic to almost all antibiotics.

I'm sorry, this is a total novel. I'm just so frustrated and sick of being written off as a hypochondriac! When I switch doctors I want to be able to go in there with at least some ideas of what I want her to look at and consider as far as tests go. Does this sound familiar to anyone at all? Can anyone recommend some things I should request or be looking out for? Any help would be so much appreciated!

Regular Member

Date Joined Oct 2007
Total Posts : 43
   Posted 10/19/2007 2:02 PM (GMT -6)   
Oh I forgot one symptom that I wanted to mention. I keep having strange muscle spasms. I say "strange" because it seems like they're spasming so fast it feels like an electric current running through my muscle. It's hard to explain, but it's almost just like a humming in my muscle! OK I'm really done now.

Regular Member

Date Joined Dec 2006
Total Posts : 275
   Posted 10/19/2007 6:49 PM (GMT -6)   

Short, you have a lot of symptoms that I have and your history sounds like mine. I was not diagnosed for 20 years so I hope you get diagnosed sooner than that! I have an auto-immune disease so I agree with Gramps, see if you can get to a rheumatologist.  There are so many different auto-immune diseases out there. Don't let them write you off.  If I was diagnosed earlier, I would have had a chance to go into remission.  My docs think I am too far along for that now.  You are not a hypochondriac, you know your body better than anyone, find a doc who will LISTEN to what you are saying and DO NOT let them pat you on the head and shoo you out the door. 

Good luck


Regular Member

Date Joined Feb 2007
Total Posts : 155
   Posted 10/19/2007 7:25 PM (GMT -6)   
Hi dear one
I say that, from the heart of a Mom of 5, who also has had years of things going on
Im not a doctor and I cannot diagnose you...
and knwo where i lvied the medical feild ahs now joined up with each other and ecery thing is getting put onto computr so someday no matter where you are in the wrold they can READ ALL about it
and what if you meet a few bad// doctors along the way...
which we have met them

Im thankful for my Doctor
who listens
at least she researches tests..
does the blood work
i was sent finally to a Rhuemetologist..
and even they are JUST admitting to learning of auto immuned diseases..

when onw is " discovered"// that was unknonwit gets the name of teh finder...
like Hodkins>..
and Sjorens which I ahve....

musclse, bones
intestines,... head...

ever had a major Deep blood work up done ?

its worth trying to get a dcotor to listen
even print of your story that you wriote here...
there has got to be
has to be someone who will truly LISTEN
They that wait upon the Lord shall renew their Strength, they shall mount up on wings as eagles, they shall run & not grow weary, they shall walk & not faint..."  Ish   40 v. 31
Sjrogrens Syndrome, Asthema, Chronic Fatigue, Chronic Pain, Head aches, Migraines, Gastro Intestinal ProblesmFibro Myalgia ,Kidney Stones Esophegial Spasms,( L4 & L5 Vertebrae Misaligned,  Spinal Stenosis and Degenerative Disc Disease , Bulging Disc, anterolisthesis L4 L5 , caused by osteoarthristis ,  slipped Disc,  bone spurs, causing pinching or pressure  on spinal chord...), ~
Meds:  Cyclobeniprine, Amitripline, Advil, Robaxacet, vitamins,  Rhodiola RX (GNC brand) ,Garlic, Vit B complex,  Acidophilous, 


Regular Member

Date Joined Oct 2007
Total Posts : 43
   Posted 10/19/2007 7:27 PM (GMT -6)   
Gramps and Melissa, thanks for your replies! To get in to see a rheumatologist will I need a referral from my GP?

Melissa, do you mind if I ask you what symptoms we have in common? Out of curiosity, why did it take so long for you to get diagnosed? Did doctor's keep writing you off or was it just hard for them to come to a diagnosis? I hope you don't mind the questions, I'm just very interested in these things so I know what to be prepared for.

Another symptom I forgot to mention (there just seem to be so many and it's hard to figure how/if they're all related) is that once in a while my skin feels tender. I first started noticing it while I was jogging, and it felt almost like my skin was bruised. Now I notice it even when I'm not doing anything strenuous.

Any more suggestions/ideas would be wonderful. Thanks so much!

Regular Member

Date Joined Oct 2007
Total Posts : 43
   Posted 10/19/2007 7:41 PM (GMT -6)   
Shelter, I was replying at the same time you were posting, didn't mean to miss you in my thank you!

Yes, it is so hard to find a good doctor. I just get annoyed when a doctor looks at my chart, sees "anxiety" written there and then finds it so easy to blame all of my problems on that diagnosis. Every time I have gone to my doctor he hasn't spent more than 20 minutes listening and talking to me. The one good doctor I was lucky to stumble across is my gastro...she spent lots of time listening to me and doing every test in the book to rule things out before diagnosing my IBS.

I don't believe I've ever had any deep blood work done. I have blood tests done to check my clotting factors because of my Factor V Leiden. Other than that I think I've only had routine testing. When I went to the doctor in March and told him some of my symptoms (around the same time he tried to tell me that I might be coming down with shingles because of my nerve pain) he said he wanted to do some blood tests. I had a couple vials drawn and a week or two later received a letter saying everything came back normal. I called the office to find out what tests were run and it was just things like cholesterol, glucose and iron. It's great that those are all normal but I felt like those were blood tests everyone gets routinely, and nothing that would help reach a diagnosis for me.

When I switch doctor's I will be sure to bring in a complete list of my symptoms and be firm about not leaving this issue alone until I get some answers.


Regular Member

Date Joined Sep 2006
Total Posts : 213
   Posted 10/20/2007 6:12 AM (GMT -6)   

Hey there Shortnsweet

Sorry to hear what you've been going through from such a young age.  I would agree with the others, a rheumotologist seems to be the way to go.  I would also suggest you look at  they fibromyalgia forum, nearly all of your symptoms describe fibro, but they can also describe any other number of conditions that need to be diagnosed properly.  Do a search for the list fibro symptoms, I'm sure you'll find it interesting.




They say life is a bowl of cherries........... we just have to learn how to spit out the pips!

Regular Member

Date Joined Oct 2007
Total Posts : 43
   Posted 10/20/2007 8:16 PM (GMT -6)   
Hi Deb,

I have done some research on fibro, even in the past. When I was 19 and having an awful time of it I brought that subject up with my doc because I thought for sure it was at least something to consider...with all of my symptoms and the IBS diagnosis. I can't remember exactly what happened but he told me I did not have fibromyalgia. I can't remember if he looked for any tender points or not. I'm a little bit skeptical about the fact that it could be fibro now because I don't think I do have any tender points. I get massages once in a while and have never felt particularly more tender in one part of my body than another. If those tender points weren't such a specific criteria for diagnosis I'd probably be convinced I had fibro, my symptoms line up so well with the DD. I'm certainly not a professional though and that was 4 years ago, so it's certainly something I'll mention again to the new doc. Thanks for the advice Deb!

New Member

Date Joined Oct 2007
Total Posts : 18
   Posted 10/24/2007 9:55 PM (GMT -6)   
omgosh...dejavu! my dh had EVERY one of those symptoms including the humming and ibs--except i dont think he had the rash. and not to get you down but he saw SEVERAL specialists including two dif rheumatologists and neither of them could tell him squat. not that that is what will happen in your case, just our experience (i hope). he also saw 2 neuros, a neuropsychiatrist, a sports phys....and others. he had tons of blood work several times but it always came back neg. the docs were sure it was in his head but here he was not even able to work anymore and in SO much pain all the time. and then of course the fatigue. but i am sure i dont need to tell you. so anyway, i wanted to ask you if had any history of accidents or injuries or were you involved in athletics much?

i still cant believe you described his symptoms so well...weird. take care and my thoughts are w you.

Regular Member

Date Joined Oct 2007
Total Posts : 43
   Posted 10/25/2007 6:35 AM (GMT -6)   
Hi momandteacher,

I'm so sorry for all that your dh has been through, especially without getting a diagnosis. I hope that if things get worse (although I pray they don't) he will keep working toward finding an answer, or at the very least get some relief from his symptoms.

One good thing for me is that so far the pain isn't so bad that it forces me to severely limit myself. I'm able to work full-time and on most weekends I'm up for a fun activity or two. Although if I do a lot Saturday chances are I'm not getting out of bed or off the couch on Sunday, and Sunday and Monday are achy days. I also can not tolerate alcohol...anything more than one or two drinks sends my IBS into overdrive and the next day my body will ache so badly it's like I've been hit by a train...being 23 and not being able to drink socially is a real bummer.

In answer to your question, the only athletics that I was involved in were running. I ran cross-country and 2 seasons of track from ages 12-18. Not much injury there since it's not a contact sport. When I was 17 I suffered a "mysterious" injury in my hip/leg that the doctor's labeled as a pelvic tilt. I saw an orthopedist and and chiropractor for a few months and they would "re-adjust" my pelvis and pubic bone so that I could keep running on it for another week. Other than that there's no real history of injuries...oddly enough I've never so much as sprained an ankle or broken a bone...not even a finger or a toe (knock on wood!) I've been rear-ended in my car twice, but both times I didn't suffer any whiplash or back injury. So I really can't pinpoint a "trigger" for my pain, and as I said in my first post, I feel I've been experiencing it at least mildly since childhood.

Again, I'm so sorry about the suffering your dh has been through. It is crazy that our symptoms are so similar! If I come up with anything from my doctor's, I'll be sure to let you know. I talked to my new doctor but haven't seen her yet, and the first thing she's going to do is test my thyroid (because one of my biggest complaints is hair loss), so we'll see what comes of that. Take care of yourself and dh!

Regular Member

Date Joined Oct 2007
Total Posts : 110
   Posted 10/25/2007 8:20 AM (GMT -6)   
You should go to the Fibro board. I am sure we would all diagnose you with FM. You sound exactly like me. I too have have to fight with Doctors also as I am only 28 and feel like I live in a seventy year olds body. I also IBS-D which is not fun I know. Go see a Rhuemy if you can sweety.
DX-Fibromyagia, Allergies, Anxiety, IBS, Migraines (and all the other Fibro related stuff)
RX-Ativan, Tramadol, Allegra-many others as needed

New Member

Date Joined Oct 2007
Total Posts : 18
   Posted 10/25/2007 10:52 PM (GMT -6)   
shortnsweet9 said...
Hi momandteacher,

I'm so sorry for all that your dh has been through, especially without getting a diagnosis. I hope that if things get worse (although I pray they don't) he will keep working toward finding an answer, or at the very least get some relief from his symptoms.

One good thing for me is that so far the pain isn't so bad that it forces me to severely limit myself. I'm able to work full-time and on most weekends I'm up for a fun activity or two. Although if I do a lot Saturday chances are I'm not getting out of bed or off the couch on Sunday, and Sunday and Monday are achy days. I also can not tolerate alcohol...anything more than one or two drinks sends my IBS into overdrive and the next day my body will ache so badly it's like I've been hit by a train...being 23 and not being able to drink socially is a real bummer.

actually, i prob wasnt clear (sorry :-)). DH *had* all your symptoms. as in past-tense...for three years or more. he started another new treatment (IMS) (no thx to the docs tho) early this year and is near 'cured'. oh and i cant believe u said hit by a train. DH's fave saying was "i've been run over by a truck"

thanks for the kind thoughts tho....i hope you find a 'cure' too :-)

Regular Member

Date Joined Dec 2006
Total Posts : 275
   Posted 10/25/2007 11:21 PM (GMT -6)   

Short, sorry it took me so long to get back.  The symptoms we have in common are the bone pain, problems at that time of the month, IBS and also the skin issues you mentioned.

There are two reasons it took me so lomg to get diagnosed.  The first was when they did a biopsy early on, my disese showed up, but they never told me.  I had two things wrong at the time and they only told us about the one.  So off I go with this disease and suffer for 15 years.  I was always sick with all these strange symptoms and I would go to the doctors and they would pat me on the head and send me on my way.  Or, when I had something go really wrong they couldn't figure out why.  It was so frustrating.  For awhile I thought I must be crazy.  I knew something wasn't right but they kept telling me there was nothing wrong. So now I am stage 3 of a potentially fatal disease and no chance of going into remission, where if they would have caught and treated it early, my chances woukd have been better.

DO NOT let them tell you there is nothing there. You know your body better than anyone and keep looking for an answer.

Don't even worry about asking questions, that's why we are here and I wish I could help you more.

Take care


Regular Member

Date Joined Oct 2007
Total Posts : 43
   Posted 10/26/2007 8:55 AM (GMT -6)   
Oh momdandteacher, I did misunderstand! I'm glad your DH is getting the relief he deserves though.

Melissa, I'm so sorry to hear of what you're going through all because the doctor's didn't correctly diagnose you soon enough! I really hope there is something that can be done for you. I will keep you in my thoughts and send well wishes your way.

I am just waiting to be able to get in to see my new GP, which should be some time next week. I had to wait until my schedule settled down because I work full-time and coach a high school cross-country team. Being so busy I'm sure doesn't help the way I feel. I already spoke with the GP on the phone and the first thing she is going to do is check my thyroid levels, as thyroid symptoms can include aches, pains, fatigue and hair loss. I'm not sure how I feel about that since I'm missing many of the other symptoms, like weight gain, etc. But I guess we have to start somewhere!

One thing that's really bugging me is my seeming inability to get in shape. When I was in high school I used to be able to run 8 miles easily (well...easily is a relative term, I guess running 8 miles is never considered easy). Even last year when I started coaching, I was able to build up to running 4 or 5 miles a day in about 3 months. Now it's so painful for me to even jog/run a mile! I've been consistent in trying to keep running but if I even jog a little bit I'm ridiculously sore the next day, which is so abnormal for me. I just feel like I'm not getting anywhere...sometimes my muscles are sore even when I haven't exercised in a few days and I can't figure out what I did to cause it. I walked less than a mile a few weeks ago and felt like I had run a marathon! Even when I'm not sore my muscles (especially in my right calf and thigh) just feel tight and heavy.

And the IBS is so frustrating. I never know what will set me off and I get into these bad cycles where I have terrible diarrhea and take Imodium...and then I'm blocked up for the next 4 days. Sometimes the most harmless food triggers an attack. I try to eat a high fiber cereal in the morning, avoid anything heavy or greasy, and eat a well-balanced dinner. It gets confusing because sometimes a food that didn't bother me one day, will bother me the next. And I never know whether to try to eat to control diarrhea or constipation. I hate laying in bed (like last night) and having to tell my BF to please move your hand off of my stomach because you're hurting me. And then to have to tell him to move away because the stomach cramps are making me sweat and he's making me feel claustrophobic. And then to have to get up twice to use the bathroom and look in the mirror to find sweat marks all over my shirt.

OK I'm just venting now...sorry! But I am looking forward to finally finding some answers...and hopefully I'll be headed in that direction soon!

Regular Member

Date Joined Dec 2006
Total Posts : 275
   Posted 10/29/2007 8:43 PM (GMT -6)   

Short, thanks for the prayers! I also have thyroid issues and I was so hoping to see if some of symptoms were related to that and would get better once I started thyroid meds.  No such luck, I guess mine wasn't thyroid related. Hopefully they will help you feel better.

We are so similiar :-) ! I used to be a fitness professional and I SO miss being able to do the things I used to do.  Basically all I can do now is water exercises and very moderate ones at that.

I can't tell you how many times I have said the exact same things to my husband. He's getting pretty good at knowing when to touch me and when I'm going through what we call a "woozy" where I am sweating and hot and I can't stand to be touched.

I am so sorry you are going through all this and vent away, that's why we"re here!


Regular Member

Date Joined Dec 2006
Total Posts : 424
   Posted 11/2/2007 6:23 PM (GMT -6)   
Hi shortnsweet,

The ovals/rash that is migrating reminds me of parasites. I don't know enough to say that's what it is, but if you are open to finding an alternative health practitioner, you could have some stool tests done or some other tests to tell you if parasites are a factor. They can also cause diarhea, fatigue and aches.

hope you will find some good help so you can feel better soon! manyembers :0)

New Member

Date Joined Nov 2007
Total Posts : 2
   Posted 11/3/2007 10:52 AM (GMT -6)   

Dear Shortnsweet9,

This is my first post here...some of what you say has been in my history. I had been to the rheumy and gastro docs. In fact, the gastro almost killed me.  She thought nothing of me having a high blood serum ammonia reading. Nothing ever found. Finally through research on the web and comparing my symptoms...I found a rare metabolic disorder that seemed to fit.  But yet it was suppose to be found in children. It also can be caused later, usually in women because of trauma or injury. The problem was I had been sick since a child and wondered.  Like you, I have lost up to 7-8 babies.

I met with the metabolic specialist. I took my complete medical history as I could remember and had had mom fill in since birth.  I had also sent the last 5 years of medical records from the five doctors that were trying to treat me.

I tested negative for what he thought I had...but we knew I could have false negatives.  Finally had liver biopsy -- and there it was.  I have Urea Cycle Disorder.  For years doctors had told me it was fibromyalgia, chronic fatigue, etc. Those were all symptoms of a deeper problem.  Am now on special medication.

So don't close your doors on hope.  Never stop believing in what your body is telling you.  Here is my box of rox that I was carrying around (just some of them):
Migraines (neurologist says I have 5 types of headaches -- now know the tension and migraines are triggered by too much ammonia in my blood)
Bone aches -- deep achy bone pain
Muscle aches
Swollen glands
Vision issues, ringing ears
Burning feet and hands
Muscle cramps, tremors
Restless Leg Syndrome
Sleep Apnea
Stomach aches and IBS
Shooting pains in colon and even anus (found out tied to migraines)
Brain fog confused Memory loss
The sleepies  smurf -I would fall asleep for days, could barely wakeup; during that time ears would ring.  They still are trying to find out what triggers
High uric acid -- causes the arthritic pain
Low body temperature --around 95
Miscarriages -- 7-8
Endometriosis --extremely severe--ultimately had to have hysterectomy
Depression sad mood swings, Anger (regretably a common issue with UCD)
All of the above and more are tied to the urea cycle disorder -- mine is ornithine transcarbamylase dificiency. There are more metabolic disorders.  Look them up on wikipedia. Basically -- all the ads saying a body needs protein, so I was eating lots of it -- was really killing me.  My body can't process correctly because enzymes are missing. Am now on medications that help.  Can you see how difficult it was to try to catagorize me? One even told my husband that it was all mental.  Fooled him!! I have to eat a low protein, high carb diet which can cause other problems.  So basic doctors are overwhelmed --treatment was like the blind men and the elephant.  "And, I ain't no elephant!!" :-)
I am now tied to a major university and metabolic genetic group.
I now believe that many of the chronic illnesses are deeper based to the mitochondria of our body. I do live with chronic constant pain.  I take pain pills if absolutely necessary. But I hurt 24 hours a day deep down in my bones.  Juicing, fresh fruits and veggies help rid all of the above symptoms.  But the disorder keeps me on my toes fighting an unseen foe at all times.  I may get depressed but I try to never give up.
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