Not sure?

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 painful...so 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 migrate...it 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 terribly...it 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!

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

Melissa

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!

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.

Cheers

Deb

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.

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.

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

Melissa

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!

Melissa

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

Hypothyroid

Vision issues, ringing ears

Burning feet and hands

Muscle cramps, tremors

Restless Leg Syndrome

Sleep Apnea

Insomnia

Stomach aches and IBS

Shooting pains in colon and even anus (found out tied to migraines)

Brain fog Memory loss

The sleepies  -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 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.