Constant Pain Unrelenting Fatigue Anyone???

Discussion in 'Fibromyalgia Main Forum' started by Lisa76, Jul 16, 2006.

  1. Lisa76

    Lisa76 New Member

    Hi. I'm a 30 year old woman and have been pretty sick for almost 2 years now. I was recently diagnosed with Fibromyalgia, not to mention PTSD and hypothyroidism. I get how all these things are linked and am currently taking Cytomel and Levothroid for the hypothyroidism. That has helped the severe pain and stiffness a bit, but I'm still just ass tired most of the time. I have a constant feeling of being unwell, (I'm either nauseous, anxious or have a terrible headache). I just have this constant dullness about me and I'm desperate for ideas or suggestions from anyone else who's going through similar stuff. I started taking 150 mg of Wellbutrin just a few days ago and I'm noticing that I'm not as emotionally raw as I usually am. I'm also kind of sick with some of the side effects but I'm hoping those will pass. In addition to that, I was given Ultram to take for the pain & headaches about a month ago and at first, it seemed to help a bit. Now it feels like everytime I take it, it just escalates my headaches or triggers them. I'm pretty much avoiding that now and take excedrin migraine when I feel one coming on. It takes the edge off a bit and for awhile, but my headaches always manage to creep in and take over.

    Anyway, I'd love to hear what other people have tried and if they've found any relief at all for their symptoms. I'm really trying to better myself and get my life back. I'm bored out of my mind and I want to go back to work. Being sick like this makes me feel hopeless sometimes but I want to keep trying. I've always been a stressed person and I come from an emotionally abusive family, (I've explored all of that and have been getting counceling). I've always been able to numb out most everything and have always been the "strong" one in my family. My dad's death 2 1/2 years ago has just brought me to my knees with grief. It took less than a year for it to totally break me- that's when the "numb" wore off for the first time in my life and now I'm this chronically ill blubbering boob. His death was tragic and untimely, he was only 51. I saw it coming though, and tried to be his emotional caretaker the year leading up to his suicide. He had many attempts leading up to him finally succeeding which took a huge toll on me. I had so much guilt and regret after that and have been working on those feelings in counceling as well. Because I had to handle the arrangements and see some pretty graphic stuff, I now have these horrible nightmares and flashbacks during the day that cause me to detach socially or just burst into tears. I know that's all part of the PTSD and I'm hoping that the Wellbutrin will help with the intrusive thoughts. I can handle that end of it and have found outlets to deal with my grief. I write a lot and also share with my husband. I know this will get better and that in time, I'm not going to always be in that moment, you know? I've also stopped interacting with the members of my family that have been abusive and negative. It has been sad not having much family support but having them around only sucks the life out of me. I have to do what's best for me and I try everyday. OK... I'll wrap up my life story now.

    My biggest problem is still the unrelenting fatigue and chronic headaches. ANY SUGGESTIONS OR IDEAS ON THIS?

    Thanks for listening!
    Lisa76
  2. zion1971

    zion1971 New Member

    i went through stressful events in my life during the course of being extremely ill. the best advice i can give is to rest rest rest. total rest for an extended period of time can give your body the opportunity to heal itself. i don't know about your other illnesses, but fibromyalgia and cfs bodies still have the capacity to get better and heal.

    hope this helps.
  3. jole

    jole Member

    Are just a part of this DD for a lot of us. There are so many different things that help different people, but none of us are the same. for instance, Ultram has worked well for me for the past 4 years, and is just now starting to not be strong enough.

    For my headaches, my neurologist started me on
    Zonegran, which is also used for seizures, and it has helped a lot. I still get migraines, but not daily, and not as severe. My headaches were called "rebound headaches" from taking so many different medications for so many years.

    The fatigue - do you take supplements? A good vitamin and supplement regeim is especially important for us, as well as a good diet. And even then there are no guarantees.

    I wish you the best, Lisa. this is a good place to ask questions as there are a lot of intelligent people with good advice to give. This board has been a lifesaver for me more than once.

    Friends - Jole
  4. MsE

    MsE New Member

    The post by Zion1971 is right on, Lisa. I was diagnosed with CFIDS in 1997. I also have all the pressure point "owies" associated with fibro. It has been my experience that you can't beat the exhaustion and trying just makes it worse. The hardest lesson I've had to learn is to accept the situation and adjust my living accordingly.

    I seldom have the excruciating headaches, and I'm lucky that when I do, Excedrin kills them. As far as the aches and pains--well, most of the time I can deal with them. When my legs get too miserable and nothing else works, I use a half a hydrocodone.

    Finally, I think you'll find that many people were first diagnosed with fibro/cfids after an extremely stressful event in their lives, especially if there has been a lot of ongoing stress anyway. It's as though our bodies can take just so much and then they cave. That's what happened to me. One darned thing after another for years that I thought I was dealing with satisfactorily--then along came a virus of some kind and I never recovered.
  5. deliarose

    deliarose New Member

    try Vit D and lots of antioxidants for fatigue. Worked for me.
    Delia
  6. deliarose

    deliarose New Member

    just fyi.. this is what Professor Marty Pall, a CFS researcher, recommends:]

    I've cut and pasted this from his neural sensitisation protocol.. .which you can find on the website of Key Pharmacy in Washington state.

    The pharmacy sells these formulations.. I haven't tried it... I just buy the supplements individually...




    1. NSP WITHOUT ALPHA LIPOIC ACID Basic Formula Capsules

    The basic formulation contains the following vitamin, mineral, and bioflavonoid supplements PER SIX (6) CAPSULES:

    Glutathione Function/Reactivation
    Ascorbic Acid 500mg, Selenium 200mcg, Coenzyme Q-10 100mg, Riboflavin-5-Phosphate 25mg

    Components of Superoxide Dismutase
    Zinc 15mg, Copper 1mg, Manganese 1mg

    Compounds Related to Peroxynitrite Biochemistry
    Magnesium 400mg, Betaine 500mg, Folic Acid 3mg

    Scavengers of Peroxynitrite and its Breakdown Products
    Ginkgo Biloba extract 120mg, Silymarin (Milk Thistle Extract) 200mg, Bilberry Extract 120mg, Cranberry Extract 400mg, Carotenoid Mixture (lycopene, beta-carotene, and lutein 5mg each)

    GABA formation co-factor to calm NMDA activation
    Pyridoxal-5-Phosphate 25mg

    Energy metabolism for protocol healing
    Acetyl-L-Carnitine 360mg

    Usual Sig (titration schedule):

    Take 1 capsule daily with food to start, then gradually increase up to 2 capsules 3 times daily (1st capsule after 10 bites of food, 2nd capsule after 20 bites of food and 3rd capsule at end of meal)

    Dispense: 30 60 100 200 Refill: ______ times PRN NR

    2. Thorne Research Vitamin E 500IU Capsules from mixed tocopherols (d-Alpha, Beta, Gamma, & Delta tocopherol)

    SIG: Take one capsule once a day.
  7. deliarose

    deliarose New Member

    Check out Recuperation. An electrolyte solution that was developed by a Spanish guy, Alfred Blasi, who says he cured his own fibro ....

    A lot of fibro people claim it has helped them. YOu can find out more by joining the Alfred Blasi Yahoo group.

    The testimonials are remarkable.
  8. deliarose

    deliarose New Member

    I get a lot of my info from Ken Lassesen's For What It's Worth site. A useful resource for anyone with CFS.
    Delia
  9. ellie-b

    ellie-b New Member

    Lisa, Your triger to fibro and cf are very likely due to the terrible stress of trying to help your father and then feeling like you failed. You did not fail. you were only helping and do it the way you felt was best, if your family dosn't agree with you, you need to distant yourself from them and anything else that you can that is giving you negitave vibs. You have been through alot and now you need to take care of your self, and your family needs to understand that you are sick and rest whenever you feel like it. With me it seems like all the time, I am older, 64 so I can take the time I need but I still feel guilty laying around so much, but if you can get the rest and therapy you need you may beat the DD or at least make it bearable so you can function. God Bless you Ellie
  10. JLH

    JLH New Member

    First of all, WELCOME to our online support group! I'm glad that you found us!

    Yes, I have a lot of pain--but a lot of it is from other medical problems, too--and I am the queen of fatigue! LOL I take tons of prescription meds which have a side effect of fatigue, my other illnesses cause fatigue, and I'm overweight which does not help the fatigue.

    What I have found that helps my fibro:
    Neurotin
    Cymbalta
    Zanaflex at bedtime
    and I sleep with a CPAP machine and oxygen for sleep apnea

    My sincere condolences on the loss of your father.


    Hugs,
    Janet
  11. hugs4evry1

    hugs4evry1 New Member

    I too have been through hell the past 2 years and I'm finally feeling much better.

    If you click on my username it will give you a list of my posts. Click on the one for my "Changes I've made on the Road to Wellness" and it explains in detail what I've done to start feeling better.

    Having hypothyroid on top of this DD and the death of a parent can make you feel like you want to die, or if you do die you wouldn't care... I know I did. (That's what sent me to the doc for more tests and we found the hypothyroid problem last fall)

    Some of the depression can be associated with the hypothyroid....I know this!! How long have you been on the Levothroid? It took me MONTHS to find relief with my thyroid meds!

    Your body has so much going on at once...I'm so sorry you're going through all of this but I'm glad you found us here.

    Please start treating your body at the basic level. Start with a really good multi vitamin. The one previously mentioned sounds wonderful and much like the one I take...Fibro Complete w/Malic Acid that they sell here at Pro Health.

    This vitamin helped to give me my life back!!! Our bodies need this extra type of nutrition because they're starving for it.

    If the Ultram seems to be triggering headaches, talk to your doc about a different med.

    Also, our bodies do much better when we take a good balanced magnesium/calcium/zinc type of supplement. It keeps our muscles relaxed and that helps with trigger points. My muscles rarely if ever...hurt anymore.

    I hope you consider starting with a good multi (toss the store brand stuff, it's not worth it). As simple as it seems, it is the beginning of the answers we're all looking for. Our bodies are nutritionally deficient for many different reasons but most will respond well to this.

    Once you're feeling better nutritionally you can search the store and find other supplements that will help your specific needs.

    I'm driving, shopping, cooking, eating out, doing laundry and showering daily too and it's all (mostly) due to the thyroid meds and my new supplement regime. Please don't poo poo this...I do understand how sick you are, I've just been there too!!!!

    Hugs,

    Nancy B.
  12. PianoGirl

    PianoGirl New Member

    First off, I'm sincerely sorry to hear about your father. You have been thru a very emotional roller coaster and that takes it toll on a person, mentally and physically. I also have been thru a living nightmare in the past year and a half, my brother passed away a year ago in february, my mother a year ago July 1, and my nephew passed away this past march, and I am only 39 years old. I can truly sympathize with you. Hopefully things will start to be less stressful and painful for you. It definitely takes a lot of time to come to grips with the death of someone close to you. I'm glad to hear that you have been getting counseling because that can be a huge "relief".

    As for the chronic headaches, I have found that going to the chiropractor has relieved my headaches by about 95%. I was having constant headaches all day long and usually by the end of the day it was close to or actually turned into a migraine. I was miserable. I started going to the chiropractor 3 times a week and it took several weeks but now it is so much better.

    I too suffer from extreme fatigue, can't seem to keep my eyes open any more. I take flexeril, neurontin and pain meds. It's a vicious cycle, if i take the medicine, i can't stay awake but if i don't take the medicine the pain is intolerable.

    I hope things start turning around for you soon. Perhaps you can try some new meds for the pain.

    Good luck
  13. JLH

    JLH New Member

    I'm so happy to read that you are feeling so much better!!

    Hugs,
    Janet
  14. hugs4evry1

    hugs4evry1 New Member

    Although I won't consider myself in remission until I make it through this summer. Last year I had a few decent weeks then the heat kicked me back down and then I got even worse.

    Still having some problems with my daughter and she's been coming in to sleep with me most nights. As we all know it's important to get all the sleep we can and some days (like today) I'm really sleep deprived again.

    We'll see how it goes....but I haven't felt this good in 2 years, yeah!!!!!

    Hugs,

    Nancy B.