• Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204630827

    Hi Nicole, My dr wrote in to the insurance company and they approved. I have Healthplus through my job. Although I havent been their in approx a year. I have COBRA. Have Cf center write a letter. You can’t go without oxygen. I mean I don’t know why ins co debate things that are obviously a neccessity. Hmmmm. Maybe thier super human and dont need oxygen to live. I also have a state funded program that pays for anything my COBRA doesn’t with my CF not for normal dr visits. Hope this helps. Becky

    Profile photo of bertbert
    Member
    #171204630534

    Quote


    Originally posted by: Anonymous
    Mellissa is right. I have been on 2liters of O2 at night since April. I thought it was the end as well. Butafter about a week, what a difference in my quality of sleep. I am restfull now. I had been waking up so much at night because O2 levels going down when we sleep that I was fatigued all day. All the dr has to do is do a 6 minute walk test. Thats what my CF dr called it. They can check your O2 that way to see if it drops to less than normal. Usually if it drops during exersice it will drop at night too. I only need it at night and with exersice. When I’m up doing normal activity it runs around 94-95. Good luck. Becky in mich

    How did you get the O2? Because my insurance company doesn’t cover it unless your pretty much dead Did you have to document your O2 levels during the night?

    Profile photo of starstar
    Member
    #171204630532

    Quote


    Originally posted by: UKBASEDJON
    Hi

    Have you had your blood gases measured lately? Your lung function may be OK but the O2 may not be so good. And you may have high Co2 levels. I found that both have a strong influence on how much energy I have.

    Also have you had a sleep test. You may find that your O2 levels drop heavily when you sleep, but come up to normal when you wake up and move around. Poor quality sleep due to low O2 levels makes a massive difference to me in my energy levels during the day.

    Kind regards

    Jon


    I’m not sure exactly all the test they performed on me, but about 3 months ago I had major blood work done and the doc had told me everything looked good. But this suggestion gives me something to question my doc about.

    I seem to sleep well through the night, but my doc had me get a sleep test anyway. I don’t know the exact results of the test, but my doctor examined them and told me everything was fine with that as well. If I can remember right, I think she told me my oxygen level dropped very little. It sounds like this oxygen has made a difference for a few people on this site, so I’m going to question my doc more about this.

    Thank you much for your suggestion.

    Profile photo of starstar
    Member
    #171204630531

    Quote


    Originally posted by: Anonymous
    Have you ever had thyroid tests done? I know exactly how you feel about the extreme fatigue – I am 37 have CF & used to deal with the same fatigue. My doctor checked my thyroid functioning (blood test) and I found that I have hypothyroidism (unfortunately I do not have the weight gain that most people get with this). I have been on medication for about a year now and I feel much better.

    Good Luck


    Yes, I’ve had a thyroid test done and that came out fine as well. Thank you for your suggestion.

    Profile photo of SeawolfSeawolf
    Member
    #171204630515

    Hi

    Have you had your blood gases measured lately? Your lung function may be OK but the O2 may not be so good. And you may have high Co2 levels. I found that both have a strong influence on how much energy I have.

    Also have you had a sleep test. You may find that your O2 levels drop heavily when you sleep, but come up to normal when you wake up and move around. Poor quality sleep due to low O2 levels makes a massive difference to me in my energy levels during the day.

    Kind regards

    Jon

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204630457

    Have you ever had thyroid tests done? I know exactly how you feel about the extreme fatigue – I am 37 have CF & used to deal with the same fatigue. My doctor checked my thyroid functioning (blood test) and I found that I have hypothyroidism (unfortunately I do not have the weight gain that most people get with this). I have been on medication for about a year now and I feel much better.

    Good Luck

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204630454

    Mellissa is right. I have been on 2liters of O2 at night since April. I thought it was the end as well. Butafter about a week, what a difference in my quality of sleep. I am restfull now. I had been waking up so much at night because O2 levels going down when we sleep that I was fatigued all day. All the dr has to do is do a 6 minute walk test. Thats what my CF dr called it. They can check your O2 that way to see if it drops to less than normal. Usually if it drops during exersice it will drop at night too. I only need it at night and with exersice. When I’m up doing normal activity it runs around 94-95. Good luck. Becky in mich

    Profile photo of starstar
    Member
    #171204630427

    Quote


    Originally posted by: senatorgraham
    Have you consulted your Doctor about a correlation between your fatigue and the medications you are taking. Perhaps one of the dosages is to high and even though it has to be that high it is causing you fatigue. Just a thought.

    Sincerely,

    “Senatorgraham”

    “My friends are my estate. Forgive me the avarice of hoarding them.”


    Thank you for sharing your idea. No, the doc has never indicated to me that that could be the cause.

    Profile photo of starstar
    Member
    #171204630425

    Quote


    Originally posted by: JazzysMom
    Another thought to try is using oxygen at night. I came home with it from my last admission. I initially thought it was the end of the world, but my doctors explained it to me like this. Our bodies go through a lot even when we are not fighting infection. Its very draining & using just 2 liters of O2 at night regenerates your body while you sleep. Its just a thought, but I am not sure it would be of benefit for you. I just know that even tho lung function is ok for you, the frequent infections could be draining your body.

    Another thought might be sleep apnea. Even tho you are sleeping a lot, you might not be getting quality sleep. Especially if you are having frequent infections, your breathing &/or coughing can interfere greatly with your quality of sleep. I found that I can manage on 5 hours of really good sleep better than I can 9-10 hours of poorer quality.


    Thank you for your input on the oxygen thing, that gives me something to discuss with my doc. As far as sleep apnea, I’ve been tested for that and it came out fine, but who knows I could have just had a good nights sleep the night of the test.

    Profile photo of starstar
    Member
    #171204630424

    Quote


    Originally posted by: Anonymous
    Hello,

    I’ve been reading these forums for some time now and just had to respond to your post because it hits so close to home. I can relate to exactly everything you wrote! I am a 27 year old female with CF and I am always tired no matter what – and I mean that literally. My CF is fairly well, but I do have my share of lung infections, I work full time, I’m married and have a 5 year old son, so my dr. has pretty much always passed my fatigue off as ” that’s just life.” (Yeah, that’s frustrating when you try to tell your dr. that you think something is wrong and he passes it off as something else) Anyway, I’ve been checked for diabetes, I’ve had my thyroid checked, my vitamin levels checked – it seems like I’ve had everything checked and everything is normal. It is SO frustrating to me and I’m sure for my family as well when all I want and need to do is sleep, no matter how much sleep I’ve already had. It does interfere with my job too. I have a full time job, but I technically don’t work full time as I’m always leaving early, coming in late or calling out sick. I’m sometimes amazed that I still have a job. Anyway, I do have a point to my story. This last Friday, I had a CF appointment and once again gave my dr. the run down of how tired I am, etc.. he asked me if I may be depressed and to make a long story short – I think that is where my problem lies. I’m wondering if it’s some sort of chemical unbalance as I have some pretty dramatic mood swings and my emotions are up and done. There is not really a reason for these to be happening as I have a good life and I’m in fairly good health, so that is why I’m wondering if it’s a chemical unbalance? Right now, I don’t know – but I will be going to talk to my primary dr. soon and hopefully find some questions. I believe I’m one step closer now.

    Good Luck to you, I hope you can find some answers! Take Care.

    SW

    27/F/wCF


    Wow, I’ve found someone who I can tell though your writing knows what I’m going through. I’ve had this same fatigue for years, when I was your age as well. I too have had thyroid and vitamin checks, iron checks, everything came out fine. I don’t have diabetes either. I was also tested for sleep apnea and that came out fine as well. I too at one time was working a full time job and ended up always leaving early or calling in sick alot as well. It was so frustrating, so now working part-time works better to balance my life, but puts a big strain on my financial situation. As far as the depression their checking you for, I also was directed in that area to try and relieve the fatigue. I never seen myself as depressed, as I’m a pretty happy persons with high hopes and always have tried to make the best of what I have. I always tried hard to succeed at what I do, especially in my jobs, I took pride in working hard and going the extra mile. I also don’t suffer from much mood swings or anything, but I thought I’d give it a try, I was thinking like you maybe it’s a chemical imbalance. So the docs tried me on 5 diffdrent anti-depressants. One actually made me think negative thoughts more often and felt depressed and blue. I also experieced too many side affects from these drugs to continue taking them. The longest I tried them was for 1 month and that’s all I could handle. But even in that 1 month I didn’t feel any great surge of energy, but maybe I wasn’t on it long enough. I hope that works for you because I know how frustrating it is. It is beyond normal fatigue/tiredness. Maybe if you can tolerate these anti-depressants, that may be your answer.

    I wish you luck as well and thank you so much for sharing your story with me.

    Profile photo of gptngptn
    Member
    #171204630401

    Another thought to try is using oxygen at night. I came home with it from my last admission. I initially thought it was the end of the world, but my doctors explained it to me like this. Our bodies go through a lot even when we are not fighting infection. Its very draining & using just 2 liters of O2 at night regenerates your body while you sleep. Its just a thought, but I am not sure it would be of benefit for you. I just know that even tho lung function is ok for you, the frequent infections could be draining your body.
    Another thought might be sleep apnea. Even tho you are sleeping a lot, you might not be getting quality sleep. Especially if you are having frequent infections, your breathing &/or coughing can interfere greatly with your quality of sleep. I found that I can manage on 5 hours of really good sleep better than I can 9-10 hours of poorer quality.

    Profile photo of greenapplegreenapple
    Member
    #171204630400

    Have you consulted your Doctor about a correlation between your fatigue and the medications you are taking. Perhaps one of the dosages is to high and even though it has to be that high it is causing you fatigue. Just a thought.

    Sincerely,

    “Senatorgraham”

    “My friends are my estate. Forgive me the avarice of hoarding them.”

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204630398

    Hello,

    I’ve been reading these forums for some time now and just had to respond to your post because it hits so close to home. I can relate to exactly everything you wrote! I am a 27 year old female with CF and I am always tired no matter what – and I mean that literally. My CF is fairly well, but I do have my share of lung infections, I work full time, I’m married and have a 5 year old son, so my dr. has pretty much always passed my fatigue off as ” that’s just life.” (Yeah, that’s frustrating when you try to tell your dr. that you think something is wrong and he passes it off as something else) Anyway, I’ve been checked for diabetes, I’ve had my thyroid checked, my vitamin levels checked – it seems like I’ve had everything checked and everything is normal. It is SO frustrating to me and I’m sure for my family as well when all I want and need to do is sleep, no matter how much sleep I’ve already had. It does interfere with my job too. I have a full time job, but I technically don’t work full time as I’m always leaving early, coming in late or calling out sick. I’m sometimes amazed that I still have a job. Anyway, I do have a point to my story. This last Friday, I had a CF appointment and once again gave my dr. the run down of how tired I am, etc.. he asked me if I may be depressed and to make a long story short – I think that is where my problem lies. I’m wondering if it’s some sort of chemical unbalance as I have some pretty dramatic mood swings and my emotions are up and done. There is not really a reason for these to be happening as I have a good life and I’m in fairly good health, so that is why I’m wondering if it’s a chemical unbalance? Right now, I don’t know – but I will be going to talk to my primary dr. soon and hopefully find some questions. I believe I’m one step closer now.

    Good Luck to you, I hope you can find some answers! Take Care.

    SW
    27/F/wCF

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204630397

    As far as diabetes, have been checked for that has well and I do not have that.

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204630396

    No, but have Pseudonomas infections.

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