Desperate for answers

[Stacy01]

   I have been seeing doctor after doctor for almost two years now.  I am desperate to find some answers to what is going on with me. I have had such a broad range of symptoms and there hasn't been a doctor that can figure out what is going on.
It started out with what I thought was restless leg syndrome. Then it went from my legs into my arms.  A few weeks after that I started to get twitching and cramping through out my body.  Then sharp stabbing pains that just seemed to happen in random places at random times, in my legs, hips, arms, feet, ears, temples, on top of my head, in the back of my head.  They last anywhere from an hour to 2 weeks and when they go away I have sore spots where the shooting pains were for days afterward.  I never know when the shooting pains are going to come or why or for how long. I can go days or even weeks without them then all of a sudden they turn up again.  The only ones that are are consistent are if I am not taking my meds and the ones in my legs, arms and feet happen all the time. I also have pain in my left shoulder, in the back under my neck.  This pain NEVER goes away and causes pain to travel up my neck and gives me severe headaches that last for a day or two.  I also have a mild headache all the time.  I am also experiencing pain in both shoulders when I move them and I can't hold them over my head or they and my arms go numb. I have seen my family doctor, a neurologist, a rheumatalogist, and a pain specialist and had every kind of blood test and x-ray and CT scan and MRI they could think of.  I have been through a ton of different medication because they are so many that actually cause my symptoms to get worse.  I just got switched from Darvocet and Soma compound with Codeine because of the severe stomach pain they were causing to a 30mg dose of time released Morphine for the pain, a muscle relaxer called Zanaflex, a medicine for nerve pain called Lyrica and ambien because even with all this medication I still can't sleep.  Like I said before, the pain in my shoulder never goes away, no matter how much medicine and even though it helps the restlessness and pain in my arms and legs, they still twitch and cramp, especially at night.  If there is anyone out there that has ever heard of these strange symptoms I would greatly appreciate your reply.  I need to find some answers as this is ruining my life. My life consists of: go to work and come home and take my meds, try to get some things done around the house, spend time with my husband and children and to bed as soon as possible to lay on the heating pad while I am propped up on a ton of pillows to try and relieve the pressure on my back and shoulders.
Thank you in advance for any advice..:)

[dlhigh]

Email addresses,  of course don't show up on this site so i'll clue it out for you..........so write debhighley at hotmail and don't forget the .com  hehehe, let's see if they are smarter than me........

[dlhigh]

I'm so sorry to hear of your troubles.  I just want you to know for whatever it's worth, that I believe you and I know how it feels.  What you are going through sounds just like my awful ordeal.  I would love to talk w/ you and share our experiences and maybe we can help each other on this.  I started on my new meds a week ago and I wish I could say that I'm pain free, but sadly I'm not.  I have some days where the pain is mild enough that I can accomplish a little around my home or spend a little time doing something I use to enjoy until fatigue sets in, but most days are filled with pain which becomes much more intense at night.  I've never felt so tired and yet unable to sleep in all my life.  I've been averaging about 2 1/2 hours of sleep a night this week and feel like I was hit by a mac truck!  I just want you to know that I'm here for you and don't let any arrogant axxhole doc get the best of you, don't give up.  You'll find out what's wrong and get help I promise, sometimes it just takes time and in some cases elimination like I was telling you about.  I had to start over too many times to mention, as I may have stated above.  Almost every time my doc sent me to a specialist, he would have to send me to another.  Doctors are just like your job or neighbors, some you like, some you don't.  So I agree, don't ever go back to see a doctor who you don't like or who treats you like that doctor did.   I was treated like that by too many doctors to mention.  I don't usually check this site, but once a week or so and I would like us to be able to talk more often, if that's ok with you.  If you want please email me at ***@****  I check this email daily and that way I can help you on how to talk when going to the doctors to get the most done in the shortest time.   As I said above,  I spent two years trying to figure out what was wrong with me and got nowhere and then once I became powerfully motivated by the inability to work and function anymore, I began researching the internet,  keeping a diary of my symptoms and I became familiar with medical terms and tests and even how to read my records and determine what had been done for me and what had not.  In 4 months I went from being nearly disabled with intense constant pain to functioning better with moderate pain and now at ten months out I have been diagnosed and hopefully I will be doing even better as time goes on and the medicine thoroughly gets into my system.  I hope you drop me a letter if you time and please remember to hang in there and don't give up hope!  Your Friend Deb

[Stacy01]

Hello,
Well, I went to the pain specialist for the second time Thursday.  Boy, was that a waste of my time!! When He got into the room he pulled out my chart and then asked me how I was doing.  I started to ge through the list of my current symptoms and he completly ignored me.  He then told me that my family doctor reffered me to him and asked him to treat my chronic pain.  Then he went over my medicines with me and when he remembered that I was taking 30mg of Morphine twice a day he got really mean and told me that would treat me but he would not prescribe me Morphine. I told him ok. ANd he just kept telling me that. I told him I was fine with not being on it and that my family doctor actually had to talk me into taking it. ANd he again told me that her wouldn't prescribe it to me that he would help me wean off of it but then there would be no more Morphine.  He then told me that in order to be his patient I had to sign some prescription medication form that states that I would only get prescriptions from him and that I would only use one pharmacy to get them filled.  He treated me like I am some kind of medicine seeker and that I actually enjoyed taking all this stupid medicine.  He then left the room and I was so frustrated that I started to cry ( he had a student in the room with him and she handed me tissues, the most compassionate thing that happened the whole time I was there). He came back in the room and asked me if I was depressed.  I told him no that I am frustrated that no one seems to want to really help me.  He then asked again if I am depressed and if I thought I should talk to someone about it. I said no, I am frustrated and upset.  Then he asked if I wanted to talk to a chronic pain therapist and I said yes just to get him to shut up! I then told him of a new symptom I was having since starting the Lyrica he gave me and he told me that its not the medication and I needed to see my fanily doctor then he left the room.  I have never been treated so badly by a doctor and I am never going to see him again but that starts me over at square one.  I have never had a problem with my family doctor so I will go see him again this week.
I have been waking up this week with headaches, watery eyes that won't go away, and my left eye feels like it going to pop out of my head.  At this point in time I really don't care what I have as long as someone believes me and can find out what it is and treat it.  I feel like that only way I am going to get any results is to not take my meds and let them see how bad off I really am without taking anything.  At this point in time if I am not taking anything I can hardly walk and I always (with or without medication) have bags under my eyes (with sleep or without), and just look terrible all of the time.  I work in a medical office and I hear how terrible I look at least 10 times a day.  So anyway, thanks for letting me vent and I hope you are having a good pain free weekend. :)

[dlhigh]

Stacy,  read my story below and then decide, if you deserve to get to the bottom of your pain and what's causing it.  The tender points is only a guide and you don't need to have a set amount of tenderpoints now to be diagnosed as having Fibromyalgia.  The American Medical Association realizes now that it's up to the doctor to notice the symptoms and the tenderpoints are only a guide and no longer a factor due to it now being known that Fibro patients don't all have tender points, but rather undiagnosed diffuse pain throughout the entire body lasting for more than three months.  I am urging you to see another neurologist or rheumatologist.  I've been where you are, my first family doc told me all he could do was send me to a pain clinic and the pain clinic doctor did say that I needed to be on Lyrica, but only because it can help with all over body pain and he had no idea what was wrong with me. My first neurologist refused to even read my medical history and said it was anxiety, as did my first neurosurgeon, my second neurosurgeon said I had mild herniated discs, but that was not able to cause the diffuse pain that I was having.  It took me seeing numerous doctors and finally the second neurologist that I met with read my history of medical records that I took with me and then began treating me for the diffuse pain which is the same meds as for Fibromyalgia, until he ran every last test that I had not yet had and told me that it has to be Fibromyalgia since everything else has been ruled out and the meds for it have been helping me with the pain.  I strongly suggest that you don't give up, see a second neurologist or rheumatologist, sometimes it takes more than one until you find a doctor who will actually read your file, since most don't and if they do and see any kind of past medications for mental conditions, they will all say the same things, exactly what they read that the first doctor wrote pertaining to your mental state and the affects of it or their belief that your pain stems from stress!!! I'm not lying when I say, that if the specialists you seen were all referrals by your family doc, then they only read the notes and tests that were done by the other docs.  These referrals provide good kick-backs for business that remain in their circle, so reading and results is not every circles primary goal.  You probably need a new family doc and need to take your medical records with you and start fresh or talk to him about sending you to have a second opinion with someone you choose.
You will then find that a doctor will diagnose you with Fibromyalgia unless the tests you haven't had done reveal something else.  Keep up hope and keep persisting on until you get an answer one way or another.  People just don't have diffuse pain with no reason.  Talk to your family doc about seeing one of those two specialists I indicated, but this time a new doctor of your choice for the second opinion, and explain that you deserve an answer.  If he won't send you, then get a new family doc who will send you to a new specialist.  I know it's difficult because you can't be without meds when in this much pain, but that is exactly what I was faced with.  I went two years without a diagnosis until I finally left my doctor of ten years.  I mistakenly went to another doctor still in my doctors networking system and was treated even more poorly until I went completely out of town to a larger one and met with my current doctor who actually listens.  He sent me to two pain clinics, two neurosurgeons, two neurologists until one actually took the time to talk with me and read my records, then do all the tests that had not been run and finally diagnose me.  It took 5 months after meeting with this second neurologist to get diagnosed, due to tests and the time that doctors like to personally monitor a patient's symptoms before diagnosing them with this syndrome.  It was worth the persistence and the patience and yes even the hoarding and cutting back of meds in order to make it through until getting in to see my new family doc and then speaking openly with him about finding a specialist who would help me figure out what was wrong.  My family doc's willingness to listen and compassionate nature towards suffering helped me keep persisting until all the tests were done and I finally could say to myself as well as to others, my pain is real and there's a name for it- Fibromyalgia.  Best wishes in finding out the truth of all your pain.

[Stacy01]

Thank you so much for your reply.  Sadly, I have already been checked for the nine tender points for Fibromyalgia and I don't have them.  The Zanaflex was prescribed by my family doctor to replace the Soma compound with codeine I was on but had terrible stomach pains from and the Lyrica was given to me by the pain specialist because I can't take Cymbalta (makes me feel suicidal).  They have both explained to me that although I most likely don't have Fibromyalgia that I can probably find relief form some of the medications used to treat it.  I have also been told this by the two other specialists that I see. But thank you for your passionate reply and thanks for being concerned about a faulty diagnosis.  At this point in time I wish it were Fibromyalgia, at least I would have a name to put ti the pain...:)

[dlhigh]

Your symptoms are almost identical to mine and I was finally diagnosed after 3 years, as having Fibromyalgia Syndrome.  I've been told by numerous people on here that this is a catch all diagnosis, but the fact is that the only way to diagnose Fibromyalgia is by having every test known and ruling everything else out and then by symptoms,  tender points and chronic pain lasting for more than 3 months.   This is a real illness that is currently not curable and causes life long pain that usually remains consistent, except during flare-ups which are usually triggered by stress or over activity and the main medications used to treat this, are the ones you are already on, so even though your doctor may not have told you, he believes you have Fibromyalgia and is avoiding diagnosing you with this!  You need to confront the doctor who prescribed you the LYRICA and the ZANAFLEX about this diagnosis.  If he is unwilling to confirm the diagnosis, then get a second opinion! Here are a couple links to sites with additional information on Fibromyalgia Syndrome, so you can read over the symptoms and other important information in order to be prepared when you meet with your doctor.  Best Wishes!
http://www.fibromyalgia-symptoms.org/fibromyalgia_what_is.html
http://www.diagnose-me.com/cond/C4334.html