Poor/Nonexistent sleep, tmj hair loss, depression and fibromyalg

Discussion in 'Fibromyalgia Main Forum' started by Hahnemann, Nov 7, 2006.

  1. Hahnemann

    Hahnemann New Member


    I am a 35 yr old female and was in a car accident 9 mths ago. Suffered major whiplash and I was in bed for 3 days but then the whiplash pain reduced. Only made the
    connection a few days ago that my sleep issues started right at that time (unable to get into stage 3, 4). Never had this weird light sleep issue before. Since then I have also developed chronic headahce, stiffness in neck/shoulders, TMJ.

    Naturally this exacerbated my existing anxiety (had developed IBS alternating constipation with diarrhoea 2 yrs ago after heavy antibiotic dosages and work/family issues

    didn't help much). I had tried dicyclomine and hyoscyamine for colon spasms last yr and found no relief whatsoever. Soon after taking that I was unable to handle even 1-2
    flakes of red pepper (even today) - my stomach burns. I was diagnosed with colitis and gastritis a yr ago. Protonix, Nexxium, Aciphex, Prevacid gave no relief.

    I can only eat 5-6 things so my nutrition has suffered in the last 2 yrs and I am a vegetarian. I joined an IBS forum some time back and am yet to find anyone with as many
    food restrictions as myself and I used to eat everything 2 yrs ago. I have hardly ever taken any medications except homoepathy so low threshold for non-herbal stuff anyway.

    Also experiencing tremendous hair loss in the last 3 months (hair stopped growing since May 06 and then major thinning from crown and sides of parting). Blood thyroid tests and cortisol (adrenal) tests are in the normal range (though everything is on the lower end). So it looks like I keep adding symptoms though this weird sleep is the worst. Till last week, had not tried any sleep aids except for homoepathy which did not help (and it always has for the minor issues I have had in the past).

    So very exhausted since I haven't really slept in 9mths. And then mid-oct 06, I forgot to take my Centrum/magnesium/calcium/vitamin b complex for 3 days and from that day on, extreme body pain started for the first time. It was probably there all long and may have been masked? Now every part of my body hurts constantly, even more on the slightest pressure or slightest activity. There is numbness and tingling in my head, hands and feet. Very tired.

    I also took this amino fuel tablets for 2 weeks last month for sleep (since it has tryptophan) and it literally drugged me. Since a couple of days after seeing a Neurologist, have started 10mg Paxil nightly along with 6-12 mg of Ambien. Really afraid that I will develop tolerance and will have to keep going higher and/or will get addicted.

    I am wondering if there are others like me in DC-VA area in a support group. Does anyone have good MD or holistic MD recommendations.

    Any pointers, comments would be greatly appreciated. I am married with no childeren. I just end up crying every day since I do not have much familial support at all and
    friends seem to have vanished.

    Thank you so much for taking the time to read this.
  2. tinktink

    tinktink New Member

    I just wanted to say that restorative sleep is essential to our health.... especially with chronic fatigue syndrome and fibromyalgia.

    Work with your doctor on this and do what ever it takes to get restortive sleep because of how very important it is to our overall wellbeing.

    You might want to get a sleep study done.

    Wish there were easy answers but there just arent but you can learn a lot by reading the posts here and using the library to do searches about sleep problems. There are different things that work for different people and hopefully you will find some answers.

    I personally have to do a lot to get adequate rest:
    I use a CPAP machine (continuous positive air pressure) with added oxygen at night while I sleep.
    I take 50mg of Trazadone (antidepressant like Paxil for you)
    I take a pain pill and a muscle relaxer too.

    Yes it is a lot but not using those things would make me soooooo much worse.

    Best of luck and Best Wishes in your search for answers.
  3. homesheba

    homesheba New Member

    i have found that sleep does wonders, if a person can actually do it and have restorative sleep. it even makes the meds wk better i think.:)
  4. charlenef

    charlenef New Member

    with stomach problem after years of heartburn 24/7 for year prevacid didnt work or anything else my gi dr put me on so i started to search for help i found that dgl -licoriceroot it is a chewable,gaucatonga reduces stomach acid and stomach enzymes have helped alot also red delicious apples the are the only one that work. good luck charlene
  5. Hahnemann

    Hahnemann New Member

    Wow all of you for taking the time to post here.
    I have never been sick before and there is anger, resentment right now (to a large extent against the guy who due to road-rage rear-ended us and to a small extent against everyone who says most of the symptoms are in my head!).

    I have never hurt a soul and I have never been this sick. What scares me is I will always be like this, helpless and dependent and I am trying very hard to keep a positive attitude.

    I am going to see a dermatologist next week for the hair loss (though I know that it won't really help) and am looking for a dentist specializing in TMJ.
  6. Hahnemann

    Hahnemann New Member

    I just figured out (what's the pt if the patient goes to so many docs and yet the onus is on him/her to figure everything themselves) that I have reactive hypoglycemia. My PCP confirmed. I am a vegetarian (no milk, beans of any kind due to IBS which I really need help with) so getting on a low-glycemic diet is going to be an uphill task but hopefully may help with IBS too.

    Any suggestions?

  7. Hahnemann

    Hahnemann New Member

    ...can't find it so sorry for the off-topic post.
    I may not be seeing it since I am so tired :)
  8. tejanya

    tejanya New Member

    is going on with you. by the way, the icon i chose is for when i have had too much fibro all at once. as in "will it ever stop?"
    keep your sense of humor. even if it has to be a bit odd for the chuckle. get into a support group or just flat out ask those friends if they would help you ......whatever. you might find out that tha was all they were waiting for. some will understand, some won't.
    i found out about somethings to expect by reading a book from the library. it is by devin starlanyl. she has had this for a while.
    were you told a trauma can make the fibro active? oh the joys of limitations.
    good luck and remember we are all here for you.
  9. Catseye

    Catseye Member

    You said you take centrum. Centrum just doesn't have enough in it of what we need. Most of us are malnourished and aren't absorbing vitamins and minerals properly from food. Ditch the centrum and go to a health food store and get a decent vitamin and a separate decent mineral blend supplements. The minerals will help alot with sleep, esp magnesium. You want the minerals separate because you don't want to take them with any protein. When you eat protein, you need acid in your stomach and the minerals will neutralize the acid. Have you looked into digestive enzymes and betaine hcl to see if you need them? good luck, karen
    [This Message was Edited on 11/20/2006]
  10. Hahnemann

    Hahnemann New Member

    ...decent as in? Any suggestions?
    For both vitamins and minerals?
    Thanks a lot
  11. Catseye

    Catseye Member

    After looking at Dr. Titelbaum's cfs protocol, (he had cfs himself) I use his formula, Daily Energy Enfusion. It's vitamins, some minerals and amino acids. I use 1/4 scoop 4 times a day. It's by Enzymatic Therapy. They also make Krebs Cycle Chelates, a mineral supplement I take about 2 or 3 times a day. And I also take a malic acid supplement for extra magnesium. When I took these plus a super electrolyte drink (electrolyte stamina) during the day, I started sleeping all night, unless the cats and dogs wake me. I'm taking a bunch of other stuff but these I started first and they made sleep possible again.

    Centrum has %100 RDA of everything but that's just not enough if we aren't digesting and absorbing stuff properly. Also, the hair loss makes me think minerals, too. I remember reading that some people that drink distilled water all the time experienced hair loss because not only does the water have no minerals whatsoever but this water will leach the minerals out of your system. Probably because when you drink it, your body needs to add so many electrolytes to it. Drinking alot of water is good, but then you need minerals, too.

    I was really amazed how I went from waking up constantly to sleeping all night long just from taking extra minerals. good luck! karen

    I ordered these online, not sure if they're available everywhere. You could probably get Miracle 2000, this is a swamp juice I took a long time ago. It tastes bad but it'll make you feel good. Just get something that has more than 100% RDA of most of the vitamins. The minerals are okay at 100% except magnesium, take extra of that.[This Message was Edited on 11/20/2006]
    [This Message was Edited on 11/20/2006]
  12. PVLady

    PVLady New Member

    Lately I am warning everyone to make sure you don't have gallstones when you have any type of digestive problem.

    I went through two years of gastritis and IBS symptoms, anxiety, insomnia, nausea etc. I was on Nexium, Carafate, Donnatel, Gaviscon, etc. I had many tests including endoscopy, abdominal and pelvic CT scans with contrast, etc.

    Finally, after all sorts of tests, my new doctor ordered a simple ultrasound of the gallbladder and found I had many stones.

    My gallbladder was full of stones and diseased - basically not working.

    The surgeon said many doctors fail to diagnose gallbladder disease. Just to make sure, you might want to ask for a ultrasound of your gallbladder.

    I had a poor appetite and could only tolerate soft foods when I did eat. I lost over 50 lbs. I also could not stand the smell of food in the house so I did not cook.

    I did not have any type of pains from the gallbladder etc., or pain in the right shoulder blade - these are some symptoms of gallbladder disease. Even so, the surgeon said many people don't have those symptoms.

    Ok, I had the gallbladder out 2 weeks ago. Already I eat almost normally. I no longer take Nexium or any other meds for stomach. I am cooking again and enjoying all foods including salads. I really think I developed alot of vitamin deficiencies during the 2 years I was sick. The vitamin deficiencies caused other problems like numbness of the skin on parts of my body.

    My anxiety has stopped, and my insomnia is better every day. As part of the gallbladder problem, I had anxiety and insomnia. My body knew something was wrong.

    Day by day I am better. All the problems were from a sick gallbladder.

    [This Message was Edited on 11/20/2006]
  13. sydneysider

    sydneysider Member

    I'm just wandering if you've had an MRI done of your neck. Neck injuries seem to be easily overlooked by the Medical profession(in my case took 25 years to find out).

    It seems that a small percentage of people develop FM after a neck injury.

    Neck injury symptoms can include stiffness in the neck and jaw, headaches, loss of power in arms, tension feelings over top of head.

    You've come to the right place here. You will find plenty of support, and advice.

    Wishing you well.
  14. llcornwell

    llcornwell New Member

    Hi neighbor!

    I live in Maryland and I have a great Rhuematologist. So caring and understand. He even fights my insurance over anything they don't agree with. He has been a great help. His name is Dr. Michael Moriarty. His number is 410-744-0661. He has offices all over MD, I go to the one in Arbutus off of 695. He even called me from his vacation when I was having a bad flare last week. He couldn't do much from "the road" but just the extra encouragement was awesome. He has been working with me to find the best treatment for me, not just the best treatment for him to recommend if you know what I mean.

    I haven't found a support group in our area yet, though I haven't really looked. I like this little "support group." I can come here a million times a day as opposed to once a week but I too do want a face to face group.

    FOR HAIR LOSS~ After I had Gastric bypass, I couldn't eat much of course and this made me lose hair. My doc said it is because of not getting enough protien. He recommended a protein supplement which comes in sports drink form called PUREPRO or Protein Pro. Got it at GNC for about 3.50. Many flavors, not that tasty but I did find ones I liked. I would drink about 2 a week. They each had about 35 grams of protein each. My hair came back quick. Also tried to eat more red meat and fish.

    SLEEP~ I have to take Ambien in order to sleep at night. I still have to take naps as well. My Rhuematologist also has me taking Trazadone, which make me very sleepy, at night.

    BELLY PROBLEMS~ I too have acid reflux and constipation. I have to drink alot of water now which I hate and I take ACIDPHEX. It is the only medicine that has worked for my gut. I also take Phillips capsilles (can't stand the liquid) when the constipation gets bad. It doesn't cause any cramps like the rest of them do because it is stimulant free. This works well. And doesn't cause diarehha.

    HERBAL STUFF~ I too can't do much herbal stuff because of the fact they make me yak. I have found I can tolerate "time released" ones though. If they are not time released, I will just revisit them 10 mins later.

    Believe it or not, I take 3 Flinestones childrens vitamens a day. This is the only way I can do vitamens without throwing up. I have been told by my doc this equals out to one adult multivitamen. I don't even have to take them all at once if I don't want too.

    I hope things are looking better for you soon. I too just found this website and the people here are great. I am close so if you ever want to meet for lunch or something to talk, let me know. I am a mature 27, which is close to your age as well.

    Good luck, or better Good health,
  15. llcornwell

    llcornwell New Member

    I forgot to mention your dentist should be able to help you or at least send you to a Oral Surgeon (they do other things than just surgery for TMJ/FM) My insurance doesn't cover a OS so I haven't had much help in this department.

    I found Ice and Heat packs help. Ice when the pain is severe and heat when it is not hurting but I want to prevent it from hurting.

    My TMJ is so bad it is making me lose my hearing. I have been told between TMJ and some slight genetic thing with the little "hearing hairs" in my ears I will be close to deaf in about 10 years. THey already want me to use hearing aids but I can't afford them and Medical Assistance doesn't cover them.

    Hope this helps,
  16. Hahnemann

    Hahnemann New Member

    Daily Energy Enfusion and Krebs Cycle Chelates and Protein Pro - will check these out...
    I will look into the gallbladder stuff and see what other symptoms there are...

    I got a TMJ MRI done - almost died with claustrophobic anxiety - machine probs and I was in a closed MRI for over 60 mins...first time ever and neither the doc nor the technicians mentioned a sedative...hmm neck MRI...
    [This Message was Edited on 11/20/2006]
  17. Hahnemann

    Hahnemann New Member

    How can we exchange email addresses? I may have some suggestions for the TMJ Pain.
    Take care
  18. enjoysue

    enjoysue New Member

    I too developed fibro after a whiplash injury. To this day driving or riding in a car or boat causes extreme pain, expecially in my neck. Arms fatigue easily. Even putting a TENS unit on my arm for just a little bit causes extreme fatigue and pain in that arm so much so that I can't even write with it afterwards. TENS units do nothing for me and if I were forced to use one for an hour I would probably kill someone...it irritates me so much. It's just one added pain for me.

    I never even took aspirin when I had a headache while growing up nor a numbing agent when I had a filling filled. I was trying to save my parents money with the dentist bill.

    I can't strive enough to stay pester your drs. to do something after you've tried what they suggested and let them know it isn't working. I did not advocate for most of my 21 years in pain and now I am a pain in THEIR sides because I will be listened to or adios, I will find someone else who believes me. You have to take a proactive stance.

    Best of luck to you and it is very important you have a support system including this site. It is so neccesary that you have a group of us who believe you and will support you and answer your questions. I am a somewhat newbie here myself but I have learned so much here.
  19. Hahnemann

    Hahnemann New Member

    I will remember that Sue. But I am getting very disillusioned. I have seen more docs in the last 2 mths than in my entire life and these are _supposed_ to be smart, educated specialists who are so clueless...I wouldn't mind if they just said, I don't know how to treat you and let me be...but they don't even follow the first principle...first do no harm...

    I will just have to heal myself...sorry for venting...

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