Discussions By Condition: I cannot get a diagnosis.

YEARS of debilitating exhaustion- Adderall- Hypotension- Now Pregnant. HELP!! :(

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: FixMEdoc
  • April 28, 2011
  • 08:35 PM

I'm a 31yo female. 6yrs ago I had a sleep study- the Dr. has been treating me w/ Adderall since, though for about 5yrs now, most days I hardly manage to get out of bed. Today, if I don't take the Adderall, I can't wake up, and if I do take it, I still feel like crap and barely manage to do more than simply be awake.

Since I refuse to believe that there isn't a better treatment out there for me, I've done my own searching over the years, trying to find some other underlying cause. Recently I've come across some information on Orthostatic Hypotension or Neurally Mediated Hypotension that says this can be debilitating in some cases. I was diagnosed w/ a cardiac condition where my bp ran low and my heart rate was high during my last pregnancy in 2002.

I'M DESPERATE TO FIND SOME ANSWERS QUICKLY!! Before this state of feeling like I can't bring myself to emerge from the bed, I managed over 200 employees at a time, took care of a home, including my 3 little girls, and was very active outside of those responsibilities.

Today I haven't worked in 5yrs, haven't seen my children in 3yrs & am now 4 months pregnant. I have 4 months to find some answers that enable me to function again or I'm going to have to hand over my 4th little girl to someone that's able to care for her :( Please help if you can think of anything that may help me find some answers!

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9 Replies:

  • I'm a 31yo female. 6yrs ago I had a sleep study- the Dr. has been treating me w/ Adderall since, though for about 5yrs now, most days I hardly manage to get out of bed. Today, if I don't take the Adderall, I can't wake up, and if I do take it, I still feel like crap and barely manage to do more than simply be awake.Since I refuse to believe that there isn't a better treatment out there for me, I've done my own searching over the years, trying to find some other underlying cause. Recently I've come across some information on Orthostatic Hypotension or Neurally Mediated Hypotension that says this can be debilitating in some cases. I was diagnosed w/ a cardiac condition where my bp ran low and my heart rate was high during my last pregnancy in 2002.I'M DESPERATE TO FIND SOME ANSWERS QUICKLY!! Before this state of feeling like I can't bring myself to emerge from the bed, I managed over 200 employees at a time, took care of a home, including my 3 little girls, and was very active outside of those responsibilities. Today I haven't worked in 5yrs, haven't seen my children in 3yrs & am now 4 months pregnant. I have 4 months to find some answers that enable me to function again or I'm going to have to hand over my 4th little girl to someone that's able to care for her :( Please help if you can think of anything that may help me find some answers!Have you had blood tests to check b12 levels, iron or thyroid function? I'm assuming you have if you are seeing a doctor.
    Anonymous 42789 Replies Flag this Response
  • Have you got more symptoms then just exhaustion??? Im wondering as if you do have a lot more.. it could be CFIDS ME or CFS (whatever you wish to call it). I once was stuck in bed for 9mths unable to take care of my kids due to it, nowdays Im mostly housebound. Ones with ME/CFS usually have low BP (or dysregulated BP) and often have high heart beats. Here's a news article of a women with a severe case of ME/CFS http://www.lowestoftjournal.co.uk/news/lowestoft_woman_s_me_nightmare_1_878797 for more on it's symptoms, check out http://wwcoco.com/cfids/bernesx.html
    taniaaust1 2267 Replies Flag this Response
  • Have you got more symptoms then just exhaustion??? Im wondering as if you do have a lot more.. it could be CFIDS ME or CFS (whatever you wish to call it). I once was stuck in bed for 9mths unable to take care of my kids due to it, nowdays Im mostly housebound. Ones with ME/CFS usually have low BP (or dysregulated BP) and often have high heart beats. Here's a news article of a women with a severe case of ME/CFS http://www.lowestoftjournal.co.uk/news/lowestoft_woman_s_me_nightmare_1_878797 for more on it's symptoms, check out http://wwcoco.com/cfids/bernesx.html**sighs** yes.... I have many other symptoms. I suppose I'd probably make the perfect poster model for CFS/CFIDS. Unfortunately, when I asked my OB/GYN about the possibility of this or fibromyalgia at my appt last week, it was apparent he's one who does not believe it's a "real" disease, but is instead simply another term for lazy women :/ He DID refer me to be seen at Sacred Heart Health System, and yesterday when I received the information through the mail from them, I looked up their website & saw THEY DO at least have a link for Fibromyalgia.
    FixMEdoc 53 Replies Flag this Response
  • Fibromyalgia (FM) is a different illness then CFS thou they can be coexisting conditions. 25% of those who get FM end up with CFS .... while 50-75% of ME/CFS patients end up getting Fibromyalgia as just a part of the ME/CFS. Best to try to work out if you probably just have Fibromyalgia (which has several things other then pain which can go along with having it but some similar coexisting things as CFS eg migraines and IBS can go along with both FM and CFS), CFS or a combination of both. Knowing which you probably have... will help guide you to find the right specialist for you. If you have ME/CFS and not just FM you'd do better in seeing someone who deals with the whole lot rather then just FM. If its just FM a Rheumatologist may be helpful. CFS/ME specialists are found in all different fields but are just specialists which have choosen to specialise in the illness eg one of my CFS/ME is a Internalist while another of my CFS/ME specialists is a endocrinologist. I suggest to get in contact with ME/CFS patients (you can look throu forums or contact local ME/CFS societies) and ask them what specialists they are seeing if you can find some in your country or area. These are specialist things and not something most doctors are able to deal with. You will get some very bad advice if you do have ME/CFS and try to see those who dont have a clue.
    taniaaust1 2267 Replies Flag this Response
  • I forgot to say that the Adderall IF you are a CFS/ME patient.. that would of likely to have made your condition worst or helped stop you from getting any better. When stimulates are given to ME/CFS patients yeah they can help us do more things short term and get us up... but the effect of doing that, will usually make us crash and make our health worst. Stimulants may have an effect a CFS/ME person may not recover from. It would be a really really bad kind of med for most with ME/CFS to take.. Adderall isnt a med recommended for CFS/ME patients. A doctor who thinks ME/CFS is a lazy persons illness rather then a serious disease (it has been said by specialists in this illness that we can be sicker then an AIDS patient two weeks before death and iller then patients with congestive heart failure)..so any doctor with a disbelief in this illness and that we are actually sick, is a very dangerous doctor to have. There actually has been ME/CFS patients die due to how doctors have tried to treat them.
    taniaaust1 2267 Replies Flag this Response
  • Thank you SO MUCH for your help in at least giving me some direction! I've not beenable to work for several yrs now, therefore have been w/o health coverage. Due to the pregnancy, I'm covered by Medicaid for now, but it's hard to find Dr's that accept it, and I'm assuming it maybe even more difficult to get to see the right Dr to help me before I'm no longer covered :/
    FixMEdoc 53 Replies Flag this Response
  • Thank you SO MUCH for your help in at least giving me some direction! I've not beenable to work for several yrs now, therefore have been w/o health coverage. Due to the pregnancy, I'm covered by Medicaid for now, but it's hard to find Dr's that accept it, and I'm assuming it maybe even more difficult to get to see the right Dr to help me before I'm no longer covered :/ Most people with ME/CFS cant work. At the sites I hang out in... half of us are on disablity pensions due to it. They are heard to get and usually involve appeals.. but just know it is possible to get a pension due to not being able to work due to this. best luck
    taniaaust1 2267 Replies Flag this Response
  • I've tried & failed for years to get on disability, since I've not been able to work due to this. I managed a dept store before onset.
    FixMEdoc 53 Replies Flag this Response
  • I've tried & failed for years to get on disability, since I've not been able to work due to this. I managed a dept store before onset. Yeah it can be hard to get.. that is where good specialists who know what is actually wrong with you can help. (it can still be a battle thou). once you know for sure what is wrong and get good specialist, I suggest to speak to others then who have gotten disability already with the issue in your country for some good advice on how to further proceed. best luck ps I got a disability pension on my third appeal (some esp from what I hear in America, need to get lawyers).
    taniaaust1 2267 Replies Flag this Response
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