Chronic Myofascial Pain/Blood Tests?
 

Hi. I went to another doc and we discussed my liver enzymes,SGOT, and SGPT that were elevated and he said this suggests problems with detoxification and or fatty changes to the liver. Can someone explain this to me in what its doing to me and symptoms that I may have which is result of that. Also my white blood count is low and he said that is associated with adrenal fatigue and low DHEA-Slufate though not reported. I had thought my vitamin d level was fine but he said it sub optimal and he is concerned about my severe osteoporsis(I'm 29) and recovered from long battle of eating disorder though which osteo is seen in. I'm asking thse ?'s because this doc though my tests such as the ekg/ssep showed pn and the other docs I saw said it was but needed to be treated like rsd. Now this doc thinks it may be Chronic Myofascial Pain and or Fibromyalgia and that the medical treatments they have done with the narcotic,depression/anti seizure meds can actually make it worse the symptoms.So possibly all the meds and most of the docs after the orthopedic put me in that boot said that was making it worse so that goes along with what the other said. Also that the spinal cord stimulator may not work for this type of pain. I didn't discuss more on what he wants to do and am going to but need to talk to my mom cause I'm so confused.The other pain docs only wanted to do either the spinal cord stimultor or catheter and none of the multple doc suggested this dx. This doc said I have had extensive workup though may want to do some more tests which of course none of this is covered by my insurance. Its not a money issue though I don't want to be taken. This doc is a holistic family medicine doc. Any thoughts?

Maybe time
 

Daniella,
Can you go to Mayo? I know you are in Calif. There is a Mayo in Ariz. Perhaps your Mom and Grandpa can take you there. Your diagnosis is all over the map. I have no clue. But I feel you need a big teaching hospital and Mayo or Johns Hopkin is the best from what I know.

I'm hoping Glenn sees your post and can advise.

Billye

Thanks. I could but I have been to Cleveland Clinic and Ucla which I thought are top places with no help at all other then the spinal cord stimulator or catheter and I don't feel up to flying all around if its going to be continued no answers. I would fly to Japan if I felt they could help me don't get me wrong but the frustration and pain I go through like many of you to go so far. I think I sent my records to Mayo but I can't remember what there response was I will ask my mom. Its frustrating with your right being all over in dx. Thanks I hope your feeling better.

daniella--
 

--you do seem to have a lot of things going on at once, but is uspect they may be seperate manifestations of a more basic, underlying disease process, and I wonder how much of it may have to do with your previous hostory of eating disorder.

Many of the symptoms may still be a recovery process from the deprivation involved with that. Some may be manifestations of deficiencies still being addressed. There may even be a degree of permanent damage from tissues deprived of proper nutrients for too long.

You may want to start this from scratch--going to a tertiary center, like Hopkins or Mayo, and being VERY specific about your history, getting as many copies of your test results over the years as you can (I realize you may not be able to get a lot of them from the earlier years--and that you'd have to have cooperation from your guardians for material accumulated when you were still a minor), and then getting a major "from scratch" work-up.

One sense I've gotten from your posts is that you are somewhat uncertain as to how to describe certain symptoms, and have trouble expressing what you've been through to new medical personnel. Given the ways that doctors interpret their patient's communications, and how quickly they form hypotheses, you may be at a disadvantage here. I, and I'm sure others here, would want to help you with your medical "presentation"--how you approach the doctors and tell them things.

This is one reason reason I constantly recommend the Liza Jane spreadsheets; they really help people formulate that presentation. They're also a wonderful way to track one's testing history over time, evaluating it for thoroughness and for possible patterns.

I also think you need a "medical history" summary sheet with your major symptoms/situations chronologically arranged, as well as what diagnoses you were given at various times. If, to put together, that takes getting a lot of doctors notes, try as hard as you can to do that--getting those notes may provide a great deal of insight into how your doctors were (or were not) thinking.

Too often, with someone with your previous history, the docs will interpret everything in light of that history (the eating disorder). That may not be inaccurate, but they tend to interpret it in psychological terms, and look askance at your symptoms from then on. You want them to look at in PHYSICAL terms, to see how much it has to do with what is going on in your body now. To that end, strive to give them information that will encourage them to problem-solve, rather than make snap decisions.

I suspect you have endocrine dysregulation, probably still have vitamin/mineral imbalnces--but a lot of test results may be skewed by the meds you've been on . . .it may be better to try for a new beginning, a new complete work-up, in a place where members of many specialties will work together and hopefully communicate with each other.

Thank you. I agree I am at a disadvantage here with my past. I actually went and saw a docter from my past eating disorder hospital to see if he had seen similar to what I'm dealing with. He was not sure if my issues were related but did say my healing process can take longer and I can still have deficiencies and often with people with ed or past ones they don't show up in blood work. The reason behind this is still out. Now I know many of us are hard cases but when a doc who is not a specialist of eating disorders hears you had one or have one your like poison. They really want nothing to do with you and have no idea how to help someone with one. I try to present myself in the best way I can and why I bring someone if I can but I do have a hard time.I feel when ever I go to the docs no matter what I do its wrong. I'm either too emotional,not enough,too many ?'s or not enough,etc. I have all my test results in a orderly fashion and a long list of written questions I ask. I will though print out those spreadsheets. Before last year I had no idea what pn was or what it feels like to live in pain that is so severe. I always felt you go to the docs and they "fix" you and that is not the case here. Also with so many opinions comes different views and answers. So who do you go with or trust?When you go to Mayo or John Hopkins and I think like I said I sent my records to Mayo but what dept do you send them. To neurology or a general area? Well thank you all always.

Try sending them to
 

this doctor: Dr. Michelle Mauerman at Mayo, Rochester, Minn. She's in the neurology dept. Send the records with a cover letter consisting of a picture of yourself, a brief summary of problem and a list of symptoms. Then tell her that your life is being destroyed and you are young and frightened. Tell her that she was recommended thru an on line forum of a former patient of hers.

Billye

Daniella,

Be careful with docs and money....there is always some one who has a cure where others fail...

This is just a possibility, but you are quite young, and maybe, your body can heal itself very effectively given time, a good diet, reasonable exercise such as walking or biking and some very light weight work under the supervision of a good doc, PT, dietician, therapist and nurse. (Not that you are not gonna hurt during it and even after it.) Sometimes it is better to leave well enough alone rather than risk getting worse.

Is there some local support group for people recovering from an eating disorder? If not, I would think that there would be a demand for that in your area. Maybe a doc or therapist would help you get one started. You can't be the only person dealing with the after effects of an eating disorder. You have a lot to offer.

Perhaps kids could benefit from all your experience....maybe you could volunteer at a school. You seem like such a caring, dear young person. I know this doesn't take away pain and icky sensations, but it does distract, and often distraction is the only way to cope with pain or other negative things we need to deal with.

Your case is complex and getting and providing peer support could be very valuable. Take time, a lot of time to think things thru.

My sympathies are with you regarding docs and all that balk at wanting to deal with people who have an eating disorder. There is a lot of prejudice, due I think to people not understanding what it is all about. I learned a lot when my daughter had a problem. Just keep the faith.

Hi and thank you. Your all amazing.I actually have a whole support team still. Though I'm better its still a daily process. I go to support groups and share my story and try to help others with eating disorders. I have started to volunteer a little too. It is a hard battle and last week at the meeting I felt I really helped a girl who is inpatient see the positives and gave her something to work on. Since it took me over 12 years I'm used to docs giving up on me and I want to show people that you have to hold onto hope and find even the smallest part of you that wants to recover. I have a lot of feelings though and am so ****** with myself about my past. It took so much from like and may have added to this. I can't change the past so just focus on the future with hopes of recovery. I have been doing well for like a year and half but that doesn't take away the 12 years of horrible abuse. I am walking every morning and still seeing my nutritionist. As for pt I have done that and didn't have good luck so am trying to increase my time on my own and have even through the hurt like hell pain. My mom tries to remind me of how far I have come but it is still frustrating when the pain is high and still so limited as many of you know. One day at a time and thanks for the name of the doc at Mayo. Your all amazing.

D
 

please keep it because she is great,i'm thimking we might all move to
Mn. My son said we would thaw out once in a while, oh it's a bit colder
then Mi. but she's a great Dr...
I was in a car accident last night,i'm ok now that they popped my shoulder
back in place,while they were doing it they asked what pain level i was in,
when i stopped yelling i told them....And the nurse said oh good i got
the morphine in your tiny little veins...Yep Mn. is started to sound good.
Sue

Good Grief
 

Sue,
Stay out of those cars. I'm thinking Bob is not good at driving. How's your shoulder today? I'd live in Minn. close to Mayo if I could. But the cold there is probably more than I could tolerate. I did not dress for 40 below temperature. I don't know if I've ever known that 40 below could exist.

Daniella,
Back to your post. Please keep Dr. Mauermann's name close to you. I had to research old records to find her name. I don't remember things very well anymore. Her dept. head that she works under is the head of the neurology dept at Mayo. Really a distinquished old gentleman and so kind. He may not be working much longer. He's up there in years. But getting the two of them together would really be a bonus.

Billye

Try sending your info directly to her.

Hi. Sue I'm so sorry. Gosh everyone is getting hurt here. Many hugs and take care.
I will keep that name. Actually I asked my mom and we had sent my records to Mayo months ago and they didn't feel they could help me so I went to Cleveland. I don't know what dept I sent them too. The issue is my dx doesn't go with my pain level so some of the docs feel there is a missing dx but finding that seems impossible after so many attempts. I guess its finding that doc to look out of the box. I really appreciate that name and may try again directly. I'm trying and have emailed a few people here to get a refferal from a happy patient with there care not just from another doc because those in the past have been less then great. Flying around as many of you know in pain is less then optimal but I would do it again if I felt confident.
Sue I'm in Ca now cause I couldn't handle that cold so colder sounds painful.

Yes
 

Think Bob should retire from car driving...I coluldn't stand the NM. weather
are i would be up there only in thee summer driving my son and family
nuts. You know i must of been getting my leg worked on,so where
in CA. That's where Bob grew up.,he never had a ticket there,,but Columia Mo. is doing us in. My shoulder hurts and can't eat,wow i must be sick..
Tell me about living in CA..Sue

Well, any time you ever need reminding what a great job you have done and how far you have come, just check in here. Recovering from an Eating Disorder is no easy task and you should be very proud of yourself.

You are an amazing young woman,
Cathie

Yorkiemom
 

Yes she is and willl always be...D you remind me of my youngest son.
Been through far to much at such a young age...But like him you never give up,you make me pround...May good things start to happen,and bask in it.
Hugs, Sue
Cathie hope your ok..

Thank you so much for your praise. It means the world. I just got back actually from the meeting at the eating disorder hospital. I really want to use my struggles to help others. I'm in a lot of pain today. My legs and from all my moving I hurt my back and its really killing as I picked up something heavy today in a wrong way and am paying.Then I live in fear of more damage to my body. Yes Sue I moved here well just right now for the winter. I'm homesick and have had a lot of problems here consisting of car accident,bad doc apts for pain management,moved 3 times for issues with apts,ear infection and now back. I'm not sure if its helping my pain in the legs but I do know that on cooler days here I even go numb so MI winters I can only imagine. Trying to take 1 day at a time. Sue and Cathie I hope your ok. I swear something is in the air that were all injuring ourselves. Many hugs

I will
 

PM you. Sue

Daniella,

Time passes one day at a time....even one second at a time. You have lots of time to recover, and no, don't look back....it is akin to looking down when you are climbing and have a fear of heights. It serves no purpose and you just get stuck there, unable to go up or down (at least that is what happens to me). Just keep climbling and looking up where you want to be. When you get to the top, then you can enjoy the view and take it all in, peaks and valleys, and then the terrain takes on a whole new meaning.

Thank you. You know people in pain are so smart and kind. All of your thoughts and encouragement help me so much. Many hugs!