Discussion in 'Fibromyalgia Main Forum' started by 2BPainfree, Jan 4, 2003.

  1. 2BPainfree

    2BPainfree New Member

    I recently had a "specialized" spect scan done
    (By Dr. Amen, if anyone has read some of his books)...just at the end of my rope with all this fatigue and poor concentration.

    Results showed a number of very interesting things...was worth every penny. Now they can target my meds to the specific areas of my brain that I am having trouble with.
    One of the findings showed I have ADD!! (along with severe depression...who wouldn't with chronic pain!) The areas involved are very specific and very interesting. Gets much more involved, but if anyone feels this relates to them I suggest taking the online neuro test at the amenclinic website (edited to remove URL)it is very professional and helpful.

    I really beleive there may be a connection between chronic fatigue, FM and ADD. I wonder how many of us would show up with ADD???? Look at the cognative problems we all have, exactly the same as ADD....dunno, just guessing. I asked Dr. Amen this question and he said he sees alot of this corralation (Add, CFS, FM) he feels being stressed or sick just makes the ADD symptoms worse.

    The books I am reading say you can have very low energy and a host of symptoms with ADD (including depression...)we all have many of the same cognative problems to begin with and were high energy people before getting sick.

    Now the question is....

    Which comes first, the chicken or the egg???
    Just a thought.

    Susan B.

  2. VickyB

    VickyB New Member

    What medication is your doctor going to put you on for ADD? There are so many medications that say they help ADD, even a high protein diet is suppose to help with ADD. I would be very interested to know what medication you will be using and if you feel it helps with pain also?
    Thanks, Sleeper01
  3. 1maqt

    1maqt New Member

    There are some theries that FMS/CFS/Autoimmune, are neurologically connected, by what I have read in the Library of this Site. You're right, which comes first, the chicken/egg.

    Have had Fms/ETC. for 28 yrs.have been very ill at times.
    Dr's have not helped much. Just started new meds, and am posting results as I go along.

    In the process and in the yrs, I have tried almost everything. Of course not much was available in 1975. One of the best things tha works for me ar Hot baths. Using epsom salts, scented (whatever bubble bath, bath salts?)
    Taking a large plastic glass(from fast food place) and pouring the hot water over my neck,shoulders, all over.

    Sometimes I had to do this twice a day, Am, Pm. but it is the only thing that worked all the time, at least somewhat.

    Just started neurontin, which is often used for seizure med.
    also Ambien, A regimin of Cipro, and was already taking Doxepin and Soma. So far I have slept all through the night for two nights in a row. Hadn't done that in months. Have had much less pain, more energy? I hope it isn't a fluke~`

    The reports I read said we get leisions on the brain much lke people w/brain injuries, and other neurological problems
    My son has Grand Mal Seizures, He's 34. My daughter has the kind where she just kinda goes to sleep. She's 42. So I have no prroblem understanding the brain connection!!

    Writh and let me know what your symtoms are, an how you deal/w all the stuff {'-'} 1maqt
  4. 2BPainfree

    2BPainfree New Member

    Madwolf...I hope you read this again. Do you know if there is any information or studies done on ADD and CFS/FM??
    Would be very interested to know...I want to research this further. Perhaps our "Brain Chemicals" are just burned out...actually, that is what shows up with the spect scans...Hot spots or not enough perfusion to specific areas of the brain. BTW: Both hands up for the
    ".....But first....." Club!!

    Second response...Please forgive me I can't remember your name (can't get back to look at it!) I am taking wellbutrin which is suppose to be very good for both depression and for ADD symptoms...(depression if it comes from the limbic area of your brain...works on the Dopamine receptors)For other types of depression SSRI's may work better (don't quote me, I am still learning all this stuff!) Dr. Amen's books are WONDERFUL!!! I highly recommend "Change your Brain, Change your Life" and "Healing ADD"....6 diff types listed in this book.

    I was also put on Depakote to "Cool off" the limbic system in my brain which is causing mood swings and a host of other emotions, anxiety" Depakote is also being used now for migrain headaches and I was told will help with my other pain as well.

    Omega3 Fish oil I was told is a must 4-6 times a day. They recommended a book (I just got it) called
    "The Omega3 connection" can't wait to read it...but supposedly it is vital for a healthy Brain.
    They recommended the "Zone diet" or at least High protein and comlex carbs, b vits, E, ect.

    In the Change your brain change your life book...it actually has recommendtions for meds and supplements/diet for each particular problem. VERY good book, explains alot!

    Also on Providgil for now.. serves to give me energy and as a stimulant as well for ADD...(although there are more direct meds for ADD) Remember the wellbutrin is suppose to help with ADD also (I never knew that before!) Also there was some mention awhile back that Wellbutrin is for short term use only...I have been told by 4 diff Docs now, this is not true. Many people take it long term with few side effects.

    Would love to hear back from all of you!

    Susan B.

  5. 2BPainfree

    2BPainfree New Member

    What is the "Cipro" regime???? Sounds like something I need!

    Good to hear from you, I hope your regime works!
    (BTW: From what I understand, Ambien is usually for short term use. They say after a period of time it can actually have the opposite effects or (chemical dependancy units are now saying, you can become dependant on it)
    Gosh...For now use it and get releif!! Maybe after you get stable you can alternate nights??

    Susan B.

  6. VickyB

    VickyB New Member

    I was wondering which receptors have to do with ADD? Serotonin or dopamine or both? Did the doctor say which receptors directly effect the ADD?
    Thanks, Sleeper01
  7. VickyB

    VickyB New Member

    I use Flaxseed oil (you can buy it at health food stores or Fred Meyers) for Omega3. The book should talk about it. Flaxseed oil is also suppose to help you lose weight also, which is an added plus. Flaxseed oil has a nutty taste, looks just like regular vegetable oil but alot better for you. I just subsitute it for regular oil in all my recipes. Add some to eggs in the morning (very good). Good luck to you!! Thanks for sharing all the informative information.
  8. VickyB

    VickyB New Member

    Did your insurance pay for the spec-scan or at least part of it? Where did you have it done?
    Thanks, Sleeper01
  9. VickyB

    VickyB New Member

    I read that you will be using Providgil. Is this for long term or short term use? The reason I am asking is because I would like to before I ask my doctor. Providgil sounds like an excellant medication to take for fatigue. Please let me know if it is long or short term?
    Thanks, Sleeper01
  10. 2BPainfree

    2BPainfree New Member

    No my insurance did not pay for the scan and it was grossly expensive...$2,700 BUT....I didn't care, I was desperate. Plus, I just knew it would help! I feel for me it was well worth every penny, especially because I would bever have allowed all these meds or taken them consistently, if I had not seen for my own eyes what was on the scan..and how ALL my symptoms corroalted perfectly to the problem areas.

    Flax seed oil is very good. However I am reading the Omega3 fish capsules are even better for some reason.

    I'm not sure how long I will be taking the providgil.The Wellbutrin REALLY helps also.

    For ADD it is different than medicating the receptors for depression and pain. ADD shows decreased perfusion in the prefrontal cortex with concentration, therefore a stimulant is used to activate the area of under activity. I am still learning all this so don't quote me!

    I am considering moving on to a psychiatrist who specializes in ADD...for now, the guy I have is doing a good job. I am READING LOT"S!!! I haven't been able to read and pay attention or remember what I have read in years!! I actually avoided it. Another book I would Highly suggest to you if you are interested is "Women with Attention Deficit Disorder" By Sori Solden It's the best book I have ever read and describes me to a tee...

    Also...BIG NEWS... I just did a search on ADD and fibromayalgia...WOW!!!
    Just wait until you see all the info! Maybe there is hope for us! I would sure like to think so. I do beleive it will take some adjusting with the meds, alot of research but who knows...there very well may be a hidden answer out there!

    Good luck to you!

    Susan B.
  11. VickyB

    VickyB New Member

    I have already been taking the Wellbutrin and Prozac for a couple of months now but I am still tired all the time. I wonder if Prozac could be making me sleepy? Have you ever taken it? How many mgs. are you taking of the Wellbutrin. I am taking 300 mgs. Thanks for the advice, I will see if I can find that book at the library.
  12. 2BPainfree

    2BPainfree New Member

    I can't handle any of the SSRI's they make me terribly sleepy....I don't know what your symptoms are or why they choose prozac (you should get Dr. Amens Books I recommended earlier, he suggests in the heal your brain, which antidepressants are best for each particular problem)
    ....Depakote so far has been good for me with no side affects...it also works on Dopamine recptors.

    I forgot to tell you earlier anything that helps out the Dopamine in your Brain helps with ADD....some supplements are natural building blocks for Dopamine. I bet the providgil will help...but as many people have said before, don't go in "asking" for a stimulant..or they may get the wrong impression. Think up a clever way to convey your "research!" tell him how exhausted you are. (I do wonder if the prozac could be contributing)

    My E-Mail is: zipnsqueeze@earthlink.net if you want to talk more! Maybe we have some things in common??

    Susan B.
  13. VickyB

    VickyB New Member

    Thanks for the reply. I think I will stop taking the Prozac for a while and see if it does indeed cause the drowsiness. When my doctor put me on this, he said be sure to take it first thing in morning because it will keep you awake at night so I am pretty sure he was thinking that it would help the fatigue. I have complained of fatigue to him every time I go to see him. Every medicine he gives me is suppose to be for fms or chronic fatigue. I do not know a clever way to approach him about stimulants. I already bombed with him over pain medicine. He will not give me anything for pain but lidocaine creme. Maybe you could give me some tips on how to approach him about stimulants. I have been going to him once a week for trigger point injections of lidocaine and steroids so he hears me whine quite often.
    Thanks, Sleeper01
  14. klutzo

    klutzo New Member

    I am a psychiatric social worker with a "classic case of FMS", and am very familiar with ADD/ADHD symptoms, especially in adults, since I worked with adults before getting sick, and I keep up with the latest research through professional journals.
    I have also visited Dr. Amen's site and taken the tests there.
    I do NOT have either ADD or ADHD. In fact, I am about as opposite as you can get from the symptoms of those two disorders, so much so, that the 3 of my husband's relatives who have it drive me bananas and try my patience beyond it's limits! I want to see some proof that there is a connection, before I will believe this one.
  15. 2BPainfree

    2BPainfree New Member

    Maybe Add and FM is a corralation that won't fit for everyone, but for some it may be an answer....I have been checking out web sites directly connected to ADD and FM (which I didn't even knew existed until I did a google search!) Some people swear the stimulants have helped.

    I'm sure this is just a drop in the bucket and there are many other eliciting factors that cause FM/CFS. However, I am beginning to beleive, the more I read, that for me and maybe others too, this may definately be an underlying factor. There are so many pcs that go into this puzzle. I'm just searching for hope and answers. It seems there must be a root cause somewhere... the brain does seem a likely place!
    Also the scan I had done proves something is going on. Dr. Amen said he frequently sees a connection with ADD, FM,CFS

    Last thing I promise! I have been reading a wonderful book which describes women with ADD without hyperactivity..there are verying degrees of the difficulties. You can be highly functional in some areas, and have difficulties in only a few others. Often people never even recognize the connection
    and go undiagnosed. I think for myself and for others who may have this underlying problem it may offer some hope...I hope!!

    Susan B.
  16. 2BPainfree

    2BPainfree New Member

    DO NOT STOP your Prozac abruptly!! You can have serious side effects if you have been taking it for awhile.
    You MUST contact your doctor first. Let him figure out the next best step. If you feel your not getting answers, maybe a psychiatrist would be more helpful...they are trained specificly for prescribing these types of medications and problems with antidepressants. They are the "experts" and will follow you closely. That's what I finally
    did (tail between my legs and all). He's been very helpful and understands the serious fatigue.

    Please CALL your Doctor Monday and then make a decision.

    With Love and concern,
    Susan B.
  17. 2BPainfree

    2BPainfree New Member

    Don't mean to sound misleading to anyone. I like to debate and throw different perspectives and possibilities out on the table. I think ADD may be a connection just like the auto-immune issues are. So many Rheums say FM is a symptom of something else...I think I tend to agree with that theory.

    Susan B.
  18. VickyB

    VickyB New Member

    I sent you an email, did you get it?
  19. 2BPainfree

    2BPainfree New Member


    Got your e-mail...yours is on the way!

  20. idiotsinc

    idiotsinc New Member

    I've been preaching this for a long time (whenever I get a chance to get on-site). I have an appointment with a neuropsycologist for testing in March (cheaper than a SPECT and covered by my insurance). Much of what our doctors are looking at are symptoms of FMS, not the root of FMS. If you have problems with SSRI or benzos try Buspar. Works on the gaba receptors instead of messing up the serotonin.