Unexplained Pain, please help

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Cait88
New Member


Date Joined Nov 2009
Total Posts : 7
   Posted 11/10/2009 8:43 AM (GMT -7)   
Hi everyone,

I posted this in the MS forum as well, but since I don't have a diagnosis yet, and chronic pain is a primary symptom of mine, I thought I might share it here too.

I am a 25 yr old female and would really appreciate any advice anyone has to share.

Three years ago I had a bout of strange symptoms that lasted 4 months and then disappeared: electric shock like pains all over my body, muscle spasms (like my right hip locking up so that I would walk with a peg leg), vertigo, anxiety, heart palpitations, urinary problems, occasional slurred speech, forgetting common words, and a tendency to fall down stairs, run into things, drop small objects, and I even noticed that the vitamin supplements, which I had taken my whole life, I was suddenly having trouble swallowing. I was also having a lot of fatigue, which would sometimes come on very suddenly, with a lot of dizziness. All of these things that seemed so obvious and scary to me, were hardly observable by anyone else. My family and friends were relatively dismissive of all these problems and made me feel like I was being a hypochondriac. My GP is the one who suspected MS and ordered an MRI, which showed nothing. I was examined by two different neurologists, who after looking at the MRI results were convinced it wasn't MS. I was tested for Lyme, which was negative. The symptoms eventually went away on their own once the spring rolled around. Every fall/winter however, the stabbing, electric shock pains come back, without any of the other symptoms. This year I began to get the pains as usual, but also had a recent episode - I guess it was a muscle spasm? - in which both my wrists locked in bent position and I couldn't move them. This lasted only about 5 minutes, but was very scary. I had no wrist pain or problems previously or since then. I don't have carpel tunnel or anything like that.

I am very frustrated by all this, and just want to get some answers! I know MS is different for everyone, and I also know that it's difficult to diagnose early on and a neg MRI don't necessarily rule out MS. So I'm a little irritated with these doctors for telling me that I absolutely don't have MS. One neurologist, who I waited 3 months to see actually told me I was just depressed and it was all in my head, and suggested Prozac. I feel so dismissed and angry. Please help!!

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 11/10/2009 2:22 PM (GMT -7)   
 
 
Hello Cait and welcome to our little part of the world...I hate that you have to be here, but glad you came... When you said something about your wrists locking in a bent position the only thing I could think of was a seizure...then as I re-read your post I thought the same thing again... could u be having seizures and just not know it?  Has anyone else ever witnessed these happenings?  I have had the "kicking of the legs" happen...it's very bizarre.  One minute I'm either laying in bed...or just sitting on the couch and all of a sudden......WHAM!!!! smhair    my right leg will do a big "ROCKETTE" kick and that's it...it's over. 
My poor cats go flying if they happen to be in the bed when this happens.... tongue
 
I can't believe that 3 different Docs haven't been able to tell you anything...I hope it's not MS...
 
Please keep me posted on your condition...too many times someone will post about a problem and then we don't hear from them again...so we are left wondering...what happened to so and so....
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 11/10/2009 9:02 PM (GMT -7)   
Hello Cait, and welcome here to the CP forum. I too, have never heard of someone having that kind of problem, but hang around long enough, and someone will come along who may have some knowledge of it. Please check here often, and if your question gets low on the first page, feel free to repost it, so that it gets some high visibilty here. If I see it at the bottom of the page, I will also try to bump it up for you. What ever you do, don't give up. Have a wonderful evening.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 11/10/2009 10:29 PM (GMT -7)   
Have you been tested for thyroid disorders? They can run a blood test for TSH. Pretty much everything you mention except the dropping small items are common for thyroid problems. I wouldn't even talk to any of my doctors about my symptoms after I told one & he wrote me off. Once I started losing a third of my hair, I went to the dermatologist & got tested. Now I'm on Synthroid & feel a million times better. Crazy enough, my PCP has a giant poster that I never even noticed on the back of all the exam room doors. It has a picture of a woman's body with a list of three dozen symptoms of thyroid disorders (gosh, I wish I could take a photo of it & post it for you). My family thought I was a hypochondriac (& I kinda wondered too). My emotions are especially rough. I will go from hypo to hyper and will switch from freezing & depressed to boiling hot & anxious. I'm still struggling some with making sure that I take my medicine faithfully every morning (god help us all when I miss multiple doses;), but when I do it makes such a difference.

Hypothyroid symptoms & Hyperthyroid symptoms can and often do cross over so if you read up on one, read up on the other. For example, I have hypothyroidism, but in spite of eating & eating & eating I lost a dangerous amount of weight until I started on Synthroid. Here's a partial list of common symptoms of thyroid disorders (HW also has a Thyroid Forum):

* Fatigue
* Mental depression / Anxiety & irritability
* Sluggishness
* Feeling cold / Intolerance to heat & increased sweating
* Weight gain / Weight loss (in spite of constant diet & activity level)
* Dry skin and hair
* Constipation / Diarrhea or frequent bowel movements
* Menstrual irregularities / Infertility
* Rapid heartbeat
* Trembling hands
* Muscle weakness
* Vision problems (irritated eyes or difficulty seeing)

The ones in bold are more common for people with Hyperthyroidism, but like I said a lot of people can have a couple of symptoms cross over from the opposite diagnosis. If that's what you have, it is very treatable. If you do get diagnosed with a Thyroid Disorder, know you are welcome in the Thyroid Forum. One other item that isn't on the list I just gave you, but is common in hypothyroidism (& sometimes in hyperthyroidism) is joint pain. My pain did go down some once I had been on Synthroid for a couple months. I still have the nerve pain, but the pain in my hips, knees, ankles, toes, wrists & fingers is definitely improved.


feel better,
frances

Cait88
New Member


Date Joined Nov 2009
Total Posts : 7
   Posted 11/12/2009 9:52 AM (GMT -7)   
Thanks everyone for your welcoming words and input.

Wow, I had never considered seizures. I guess I thought that people who have seizures aren't conscious when they happen, so they don't remember them. It is usually me who notices these things, while they seem to go unnoticed by everyone else.

I think I had a thyroid test years ago, but I suppose I should have another one after reading that list! It does sound like me.... I have trouble keeping on weight and am very thin. I always attributed that to the anxiety.

My only constant symptom is the stabbing electric shook like pains, which I get everywhere and seem exacerbated by cold and rainy weather. By I know this must be related to all the muscle spasms and everything else because I get them the same time of year. My main problem right now is that I'm uninsured, so I don't know how to go about getting treatment. :( Hopefully that changes soon. Thanks everyone, and I will keep you updated.

Cait

Hello~Kitty
Veteran Member


Date Joined Jun 2005
Total Posts : 610
   Posted 11/12/2009 1:06 PM (GMT -7)   
Cait,

Have you ever been checked for fibromyalgia cause those symptoms your experiencing can be symptoms on it, and it could explain also why you feel worse during certain times of the year as some people with fibro get flares depending on the time of year and weather. Also you say that the doctors cant find anything in the tests they've done, and thats usually how they diagnose fibro, as their's no test for fibro but they rule everything else out. Also Fibro has a wide range of symptoms and not everyone gets the same symptoms. Also some doctors wont mention a diagnosis of fibro cause they dont beleive in it, so thats another quest in finding a doctor who will listen and treat. So if you havent been diagnosed already and cant find another reason for your symptoms, then find a doctor who specializes in fibromyalgia and ask them what they think. Also fibro can be diagnosed by doctors touching certain spots on your body and if so many of them hurts, then thats how they usually diagnose you.

Also for seizures, their's so many diffrent kinds of siezures. I know most people when they think siezures they think of those grand mal ones where they're on the ground skaking and losing control of their bladder, but actually most siezures are not like that. But I would of think that after seeing 2 neouro doctors, that one of them would of caught on to a form of siezures if you explained to them your symptoms. So maybe making another appointment with one of those doctors can help rule out any kind of siezures, I've been tested before and it isnt painful. They put these weird wires glued to your head and they flash lights in diffrent patterns on the side to see if it activates any seizures.

Well keep us updated.
-Carmen

Carmen~*~*~Chronic Pain Moderator

DX-Chronic Pain due to two freak car accidents, Pancreatic Divisum,Fibromyalgia, Asthma, Depression w/anxiety, Migraines

Meds- Suboxone 16mg for pain, Cymbalta 60mg, Lyrica 50mg, Imitrex 100mg PRN,Ibprofen 800mg PRN, Ventolin Inhaler PRN, Visteril PRN

 


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 11/12/2009 7:13 PM (GMT -7)   
Another possibility is maybe you have a vestibular disorder. They can visually test for Nystagmus, but it is better if you are videotaped by a professional to see if you present with it. If that's the case, it would explain most everything except maybe the swallowing (which, my gosh, with everything you've got going on, you have every right to feel anxious).

I had a caloric test & tilt table test done by my ENT & they came back normal, but I was lucky & had a really fantastic neurologist who told me that while he didn't know what was wrong, he believed that it was real. Heart palpitations were caused by dropping bp. Headaches were caused by eye strain. I was fighting so hard to keep my balance (without realizing it) that my muscles were all tired & would spasm. Slurred speech. Forgetting words. Trouble concentrating. Trouble with keeping track of time (I could read a clock, but would struggle to tell without a clock whether 30 minutes or 3 hours had passed). Trouble adding (even though I scored a 780/800 on the GRE). Crashing into walls (couldn't judge where the wall was exactly). Felt like I was spinning, sometimes like the room was spinning & rarely like both I & the room were spinning in different directions. Falling off stairs, ladders, etc. because suddenly everything would start spinning. Trouble turning door knobs, twisting off lids, etc. I could go on. In my case, it was due to a birth defect that was impacting the balance center of my brain (which did show up on my MRI), but there were people at the vestibular rehab center where I went with all sorts of problems causing the vestibular issues -- stroke, birth defects, sports injuries, all sorts of things.

It's not as common as thyroid disorders, but it definitely could include a bunch of your symptoms. Treatment is specialized physical therapy where basically they torture you by making you dizzy & teaching your body how to get better at keeping its balance. You need a doctor to diagnose a vestibular disorder, but you could try a home self-test. It's not 100%, but it does work in a lot of cases & doctors/physical therapists do suggest it so it's not just some crazy out there thing. Keep in mind that SAFETY is very important. DO NOT do this alone. Do not do it by any glass, tables, heaters or anything else you would keep a small child away from. If you can, do it by a bed or something soft on the off chance that you start to fall. What you do is stand one foot directly in front of the other, cross your hands over your chest and stand there until you have your balance, & then close your eyes. See if you can keep your balance for a few seconds. If you START TO FALL, immediately open YOUR EYES, put your hands out & do whatever you need to catch your balance (that's also why another person can be helpful). If you are totally unable to do it & fall over right away, I would say to go get tested. Usually either a neurologist or ENT would test for this. I think neurologists are generally better, but an ENT at a teaching hospital would be good too. If you can do it for only 2-3 seconds, then maybe keep it in mind that it could be an issue. If you can do it for 5 seconds or more, you are totally golden & it would be unlikely that you have any sort of vestibular problems (but only a doctor can make a definitive diagnosis).

I hope you don't have that, but it's such a simple test I share it with just about anybody. My friend's mom had similar symptoms & I shared this self-test with her. She couldn't do it for even one second (she's post stroke). Now she's in therapy & is doing much better. I know several other people who also did the self-test & 2 of them also failed & turned out to test positive for Nystagmus as well.

Other than that, I agree with Carmen about maybe trying to get tested for fibro. Seizures usually would be only for a short period of time & it sounds like your issues are more constant. I think probably if you have something neurological going on it is more likely something rare.

feel better,
frances
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