i'm willing to try anything.
This is what I love about this forum. It easy/clear to see what another person could do to help their situation, but it's hard to see it for ourselves or at least for me. So, getting everyone's input is EXTREMELY helpful and is motivating me to be more proactive and search out new options and treatments.
Thanks !
I wouldn't be so sure you are not in pain. When you sleep 18 hours a day, how would you know? When you start to get active on vacation and then sleep for a couple days....
Anyway here is what happens to to us. Its a couple of things. First is Adrenal fatique. There are four stages each getting worse (see if any of this applies:
1. In this stage, the body is alarmed by the stressors and mounts an aggressive anti-stress response to overcome the stressors. This anti-stress response is mediated by an increase in anti-stress hormones like cortisol. The amount of anti-stress hormone required is well within the body's output capacity. Fatigue is usually quite mild and usually occurs in the morning upon awakening or in the mid-afternoon.Many people even consider this state "normal" as part of living in the modern society. Those who require coffee to "kick start" the day may already be in this stage and not be aware of it.
2. With chronic or severe stress, the adrenals are eventually unable to keep up with the body's demand for cortisol. Adrenal Fatigue now enters into Stage 2. Normal daily functions can still be carried out, but the sense of fatigue is pronounced at the end of each day as the body needs more rest than usual to recover. Despite a full night's rest, the body does not feel refreshed in the morning. Anxiety starts to set in and the person becomes easily irritable. Insomnia becomes more common, as it takes longer to fall asleep and there are frequent awakenings as well. Infections become recurrent. PMS and menstrual irregularities surface and symptoms suggestive of hypothyroidism (such as a sensation of feeling cold and a sluggish metabolism) become prevalent. The thyroid glands are usually affected at this stage. Sluggishness, feeling cold, and weight gain centrally, despite exercise and diet, are the predominant symptoms that usually bring the patients to their physicians for the first time. Thyroid replacement is routinely prescribed but ovarian hormones, synthetic or bio-identical, are also considered. However, the vast majority of patients who undergo such hormonal adjustment remain symptomatic over time and their treatments usually fail. At this stage, many people are prescribed anti-depressants. The many warning signs of the body continue to be ignored, as most people will rely on more and more stimulants to keep their mood up. Those who require multiple cups of coffee to sustain them may well be entrenched at this stage without knowing it.
3. Adrenal Exhaustion. Adrenal Exhaustion refers to Stage 3 of Adrenal Fatigue. As adrenal function is weakened further, the body's need for adrenal hormones remains unabated if stress is not reduced. The adrenals are no longer able to keep up with the ever-increasing demand for cortisol production needed to overcome the stress and they become exhausted. Cortisol output starts to decline and this usually happens gradually. If the stressors are severe, an adrenal crash may occur, to be followed by a longer than usual recovery. The body enters into the stage where the primary goal is conservation of energy to ensure survival. Systematically, the body goes into a slow-down mode and starts to break down muscle tissue to produce energy. This catabolic stage results in the breakdown of muscles and protein wasting. Chronic fatigue is common and exercise tolerance is reduced. Concurrently, chronic fibromyalgia appears. Toxic metabolites begin to accumulate throughout the body, leading to brain fog and insomnia. Depression becomes severe and constant.
4. Failure. Eventually, the adrenals will become totally exhausted. Patients at this stage will have a high chance of cardiovascular collapse and death. When Adrenal Fatigue has advanced to this stage, the line between it and Addison's disease, also called adrenal insufficiency, can be blurred. While the etiology of the two conditions may be different, the ultimate clinical presentations can be quite similar as they both represent a continuum of decompensation in adrenal function. At this stage, severe advanced adrenal crisis manifestation can be very similar and akin to an Addisonian crisis or acute adrenal insufficiency which, is a recognized medical condition. Symptoms of this include sudden, penetrating pain in the lower back, abdomen or legs, severe vomiting and diarrhea, dehydration, low blood pressure and loss of consciousness. Addisonian crisis is rare and in most cases, the symptoms are severe enough that patients often seek medical treatment before a crisis occurs. However, in about 25 percent of patients, the symptoms first appear during an Addisonian crisis. If left untreated, the Addisonian crisis can be fatal.
And here for US is where it really get weird. In order to help out we take Prednisone, which makes everything worse...... When you get to stage 3(Adrenal Exhaustion) Adrenal Fatigue becomes very complicated to DX because in this stage the body's multiple organ systems become systematically decompensated concurrently. No body knows what up (and whats not.
So what does the integrated approach do? Pain gets under control, it may already be but the body doesn't know that. The mind is stressed but remember the disease does that too. Cognitive behavior part helps you to renegotiate the neural pathways. (Trust me if I'm suggesting this its has merit. Just everybody knows I don't have a humanist approach bone in my body let alone a like for "therapy") The PT part of it isn't just rehab its part of helping your body regain real movement and focus. Just because your body tells you, you are exhausted, doesn't mean you are.
Seriously if parts one and two and at least a bit of three doesn't describe part of whats going on, I'll take a refresher course in reading comprhension. Take this post to your doc appointment and ask him.......................
Will do. I don't have insominia and sleep through the night getting 10- 12 hours nightly. That's normal for me. And I wake up like I've been in a coma.
tntlamb said:
I wouldn't be so sure you are not in pain. When you sleep 18 hours a day, how would you know? When you start to get active on vacation and then sleep for a couple days....
Anyway here is what happens to to us. Its a couple of things. First is Adrenal fatique. There are four stages each getting worse (see if any of this applies:
1. In this stage, the body is alarmed by the stressors and mounts an aggressive anti-stress response to overcome the stressors. This anti-stress response is mediated by an increase in anti-stress hormones like cortisol. The amount of anti-stress hormone required is well within the body's output capacity. Fatigue is usually quite mild and usually occurs in the morning upon awakening or in the mid-afternoon.Many people even consider this state "normal" as part of living in the modern society. Those who require coffee to "kick start" the day may already be in this stage and not be aware of it.
2. With chronic or severe stress, the adrenals are eventually unable to keep up with the body's demand for cortisol. Adrenal Fatigue now enters into Stage 2. Normal daily functions can still be carried out, but the sense of fatigue is pronounced at the end of each day as the body needs more rest than usual to recover. Despite a full night's rest, the body does not feel refreshed in the morning. Anxiety starts to set in and the person becomes easily irritable. Insomnia becomes more common, as it takes longer to fall asleep and there are frequent awakenings as well. Infections become recurrent. PMS and menstrual irregularities surface and symptoms suggestive of hypothyroidism (such as a sensation of feeling cold and a sluggish metabolism) become prevalent. The thyroid glands are usually affected at this stage. Sluggishness, feeling cold, and weight gain centrally, despite exercise and diet, are the predominant symptoms that usually bring the patients to their physicians for the first time. Thyroid replacement is routinely prescribed but ovarian hormones, synthetic or bio-identical, are also considered. However, the vast majority of patients who undergo such hormonal adjustment remain symptomatic over time and their treatments usually fail. At this stage, many people are prescribed anti-depressants. The many warning signs of the body continue to be ignored, as most people will rely on more and more stimulants to keep their mood up. Those who require multiple cups of coffee to sustain them may well be entrenched at this stage without knowing it.
3. Adrenal Exhaustion. Adrenal Exhaustion refers to Stage 3 of Adrenal Fatigue. As adrenal function is weakened further, the body's need for adrenal hormones remains unabated if stress is not reduced. The adrenals are no longer able to keep up with the ever-increasing demand for cortisol production needed to overcome the stress and they become exhausted. Cortisol output starts to decline and this usually happens gradually. If the stressors are severe, an adrenal crash may occur, to be followed by a longer than usual recovery. The body enters into the stage where the primary goal is conservation of energy to ensure survival. Systematically, the body goes into a slow-down mode and starts to break down muscle tissue to produce energy. This catabolic stage results in the breakdown of muscles and protein wasting. Chronic fatigue is common and exercise tolerance is reduced. Concurrently, chronic fibromyalgia appears. Toxic metabolites begin to accumulate throughout the body, leading to brain fog and insomnia. Depression becomes severe and constant.
4. Failure. Eventually, the adrenals will become totally exhausted. Patients at this stage will have a high chance of cardiovascular collapse and death. When Adrenal Fatigue has advanced to this stage, the line between it and Addison's disease, also called adrenal insufficiency, can be blurred. While the etiology of the two conditions may be different, the ultimate clinical presentations can be quite similar as they both represent a continuum of decompensation in adrenal function. At this stage, severe advanced adrenal crisis manifestation can be very similar and akin to an Addisonian crisis or acute adrenal insufficiency which, is a recognized medical condition. Symptoms of this include sudden, penetrating pain in the lower back, abdomen or legs, severe vomiting and diarrhea, dehydration, low blood pressure and loss of consciousness. Addisonian crisis is rare and in most cases, the symptoms are severe enough that patients often seek medical treatment before a crisis occurs. However, in about 25 percent of patients, the symptoms first appear during an Addisonian crisis. If left untreated, the Addisonian crisis can be fatal.
And here for US is where it really get weird. In order to help out we take Prednisone, which makes everything worse...... When you get to stage 3(Adrenal Exhaustion) Adrenal Fatigue becomes very complicated to DX because in this stage the body's multiple organ systems become systematically decompensated concurrently. No body knows what up (and whats not.
So what does the integrated approach do? Pain gets under control, it may already be but the body doesn't know that. The mind is stressed but remember the disease does that too. Cognitive behavior part helps you to renegotiate the neural pathways. (Trust me if I'm suggesting this its has merit. Just everybody knows I don't have a humanist approach bone in my body let alone a like for "therapy") The PT part of it isn't just rehab its part of helping your body regain real movement and focus. Just because your body tells you, you are exhausted, doesn't mean you are.
Seriously if parts one and two and at least a bit of three doesn't describe part of whats going on, I'll take a refresher course in reading comprhension. Take this post to your doc appointment and ask him.......................
Frances I'm not a doctor but I don't think that is enough prednisone. I have seen several that have given me various doses-but the last one that was given to me by my rheum. PA was 25mg x 3d, 20mg x 3d, 15mg x 3d, 10mg x 3d, 5mg x 3d. She said that if you do not take enough-then you might as well not even do it. In fact- I had to repeat mine. Call your doctor and get instructions. He needs to know what is going on also. Best Wishes!
Frances said:
I decided I can't take it anymore. I'm not much better than 6 days ago and need to get back to work. So, I decided to do my own prednisone burst.
I started today with 25 mg. Any suggestions on how I should complete my burst? 25 mg x 2 days 20mg x2 days 15mg x 2 days etc. Or is this a faster burst I can do?
Hi Frances, I am so sorry you are going through this. I have to say in 32 years I can count on one hand I have taken to my bed because of this disease. But of course I take a strong analgesic and have done for years. I have to otherwise I probably would end up in bed as well. I am not ashamed that I have to take Vicodin to get through the day as for me, it is far better than the alternative. I live in the Midwest and it has been a doozie of a winter hasn't it? But oddly winter and cold does not affect my joints. The summer humidity is the culprit that slows me down so I have an annual countdown to Autumn. THAT keeps me going. Because I take the analgesic I am able to power walk ( as power-ful as a person with PsA can do, LOL) 3 times per week at my local fitness center as the indoor track provides ideal conditions. Most days I do a 5k but it took me about a year to get up to that distance.I could never do this on concrete or asphalt. I am not saying I do this every week and of course there are times that it is out of the question when I have a flare -up. But there are times I could only do half that distance but I do push myself. Often times the next day I am complaining about the painful joints but recover enough to get going the next day. My point is, sometimes I force myself to do this and after the first mile, the endorphins kick in and off you go ! I never in a million years thought I would profess any type of exercise but it does help my brain, and my mood.
Stop worrying about getting a man for now. You take care of you and it will fall in to place. You are more important than any man, believe me. It doesn't have to be debilitating Frances, get out there, get your ipod tuned up and kick the ass of this disease!
I know some will not approve but I also take an antidepressant. My first Rheumatologist told me 90% of her patients suffer chronic depression for obvious reasons and again I am not ashamed I have to take this as well. Perhaps a chat with your Rheumatologist regarding your fears, etc.
I wish you the best and keep coming to this site for support !
Thanks for your kind and supporting words Erinsmum. I do take an anti depressant and suffer far worse from fatigue than pain. It's frustrating getting rheumy's to understand and address my fatigue symptom. But I have a plan for my next appointment on how to discuss the debilitating effect of the fatigue.
warmly,
Frances
Erinsmum said:
Hi Frances, I am so sorry you are going through this. I have to say in 32 years I can count on one hand I have taken to my bed because of this disease. But of course I take a strong analgesic and have done for years. I have to otherwise I probably would end up in bed as well. I am not ashamed that I have to take Vicodin to get through the day as for me, it is far better than the alternative. I live in the Midwest and it has been a doozie of a winter hasn't it? But oddly winter and cold does not affect my joints. The summer humidity is the culprit that slows me down so I have an annual countdown to Autumn. THAT keeps me going. Because I take the analgesic I am able to power walk ( as power-ful as a person with PsA can do, LOL) 3 times per week at my local fitness center as the indoor track provides ideal conditions. Most days I do a 5k but it took me about a year to get up to that distance.I could never do this on concrete or asphalt. I am not saying I do this every week and of course there are times that it is out of the question when I have a flare -up. But there are times I could only do half that distance but I do push myself. Often times the next day I am complaining about the painful joints but recover enough to get going the next day. My point is, sometimes I force myself to do this and after the first mile, the endorphins kick in and off you go ! I never in a million years thought I would profess any type of exercise but it does help my brain, and my mood.
Stop worrying about getting a man for now. You take care of you and it will fall in to place. You are more important than any man, believe me. It doesn't have to be debilitating Frances, get out there, get your ipod tuned up and kick the ass of this disease!
I know some will not approve but I also take an antidepressant. My first Rheumatologist told me 90% of her patients suffer chronic depression for obvious reasons and again I am not ashamed I have to take this as well. Perhaps a chat with your Rheumatologist regarding your fears, etc.
I wish you the best and keep coming to this site for support !
Frances,
I'm new on this site, so I only just saw your original post. I hope by now that you are having some improvement, and that somewhere, somehow, you got some help from your rheumy.
I lost touch with so much of the 'real world' out there /bc of illness fatigue that It still makes me very depressed or discuraged. Other days, I celebrate the fact that with the internet I CAN 'talk' to people! It is my lifeline much of the time.
Frances said:
thanks AuroaB
AuroraB said:Sorry to hear you are having such a miserable time. Some really good practical advice in this thread - which I'm noting for my own use! So thanks for posting Frances as by doing so you've helped someone else. Hoping you get some good advice from your doctor.
Hi Megster,
Thanks for responding and for your concern. So you also suffer from extreme fatigue? I'm asking because I'm trying to determine how I fit on the spectrum of fatigue and am so atypical with my extreme fatigue?
thanks,
Frances
Megster said:
Frances,
I'm new on this site, so I only just saw your original post. I hope by now that you are having some improvement, and that somewhere, somehow, you got some help from your rheumy.
I lost touch with so much of the 'real world' out there /bc of illness fatigue that It still makes me very depressed or discuraged. Other days, I celebrate the fact that with the internet I CAN 'talk' to people! It is my lifeline much of the time.
Frances said:thanks AuroaB
AuroraB said:Sorry to hear you are having such a miserable time. Some really good practical advice in this thread - which I'm noting for my own use! So thanks for posting Frances as by doing so you've helped someone else. Hoping you get some good advice from your doctor.
FRances,
I'm slow getting back b/c I'm still dealing with extreme tooth pain which doesn't seem to have easily detectable dental cause. sigh. And pain is.....well......beyond distracting!
Fatigue. I don't know where I am on the fatigue spectrum. I know it's better than it was before I went on methetrexate. I, too, also take an anti-depressant, though my depression has never been typical in that since earliest childhood I've had to fight to keep going, so I really am not able most of the time to figure out how I feel physically or emotionally....And so when I do get really fatigued, I'm always worried that what it really is is more classic depression, and so a lot of times I drag myself up and out no matter what.
but I'm getting better at figuring this out. And also getting better at giving in.
But I am frequently worry about how limited my life has become because I can't depend on my energy lasting. I don't go out at night, for instance, and my husband is pretty used to going to concerts or ocasionaly plays by himself or with our daughter.
This is a bit rambly and prob. doesn't really answer your question at all. ask me another one!
how are you doing today?
best thoughts from here, m
Your response is VERY helpful. I also find it very difficult to go out at night because I'm fatigue. And I was thinking about asking to add methotrexate to my Enbrel. I stopped taking methotrexate because it made me sick, but everyone on here says the injectable metho has far fewer side effects.
Thanks !
FRances,
I was initially worried about taking mtx because of all the side effects, but it's been a real help. Much less joint swelling, I can use my hands again, and the fatigue really has improved some. I still crash in the afternoons, and pretty much schedule in a nap and a little bit of time just lying and reading. And it is extremely unusual for me to be awake past 9:30. in part because I try to drive out to a community rec center about 20 mins away to swim in the very early mornings or do an aqua aerobics type class. It is my big outing of the day (I work at home) and generally boosts my morale and spirits. If I can manage to get self motivated to get past the initial tiredness.
Which analgesic do you take?
Erinsmum said:
Hi Frances, I am so sorry you are going through this. I have to say in 32 years I can count on one hand I have taken to my bed because of this disease. But of course I take a strong analgesic and have done for years. I have to otherwise I probably would end up in bed as well. I am not ashamed that I have to take Vicodin to get through the day as for me, it is far better than the alternative. I live in the Midwest and it has been a doozie of a winter hasn't it? But oddly winter and cold does not affect my joints. The summer humidity is the culprit that slows me down so I have an annual countdown to Autumn. THAT keeps me going. Because I take the analgesic I am able to power walk ( as power-ful as a person with PsA can do, LOL) 3 times per week at my local fitness center as the indoor track provides ideal conditions. Most days I do a 5k but it took me about a year to get up to that distance.I could never do this on concrete or asphalt. I am not saying I do this every week and of course there are times that it is out of the question when I have a flare -up. But there are times I could only do half that distance but I do push myself. Often times the next day I am complaining about the painful joints but recover enough to get going the next day. My point is, sometimes I force myself to do this and after the first mile, the endorphins kick in and off you go ! I never in a million years thought I would profess any type of exercise but it does help my brain, and my mood.
Stop worrying about getting a man for now. You take care of you and it will fall in to place. You are more important than any man, believe me. It doesn't have to be debilitating Frances, get out there, get your ipod tuned up and kick the ass of this disease!
I know some will not approve but I also take an antidepressant. My first Rheumatologist told me 90% of her patients suffer chronic depression for obvious reasons and again I am not ashamed I have to take this as well. Perhaps a chat with your Rheumatologist regarding your fears, etc.
I wish you the best and keep coming to this site for support !
Frances said:
Which analgesic do you take?
I take ibuprofen, lately very regularly though that's for teeth at the moment. Usually, the mtx keeps pain remote.
For you Frances a gentle, mental hug if thats ok . I hear you and I have been fighting myself to get out of bed and keep moving. I have my down days though. That is what I call those days when I just stay in my room with the heater on and read and sleep or stare out the window and pet my cat. Spring is here now. The days are getting longer and Summer is coming.
I am so sorry your going through this. You are in my thoughts. Hang on.
Waterfairy, thanks for the hug and your sweet, caring words. I'm doing so much better physically and mentally. I think I'm getting over this flare or whatever it was.
I also have a cat and it was helpful having him in bed by my side while I was sooo fatigued.
waterfairy said:
For you Frances a gentle, mental hug if thats ok . I hear you and I have been fighting myself to get out of bed and keep moving. I have my down days though. That is what I call those days when I just stay in my room with the heater on and read and sleep or stare out the window and pet my cat. Spring is here now. The days are getting longer and Summer is coming.
I am so sorry your going through this. You are in my thoughts. Hang on.
Well the coma -like sleep hit me again Sunday. It was sleeting here and the arthritis foundation weather indicator was at its highest level - Extreme. Fortunately, I started feeling better yesterday afternoon. I did leave a message for my rheumy and he didn't call me back. This is the second time in the last month he hasn't returned my call.
He's always returned my calls. I'm wondering if he's giving up on me because he doesn't know how to address my fatigue issue? It took me so long to find this doc and I think he's been very good. I have an app't on April 10th. Any suggestions on how to talk to him. I have a tip list on how to talk about my fatigue issue, but now I'm also concerned that he isn't returning my calls and I rarely call my doc.
Frances, you have some legitimate questions. I would ask that you start a new thread especially with the talking to your doctor question. This thread has 60 some posts and over 5 pages. It is at the point (prolly past the point) where member won't go through it all to answer. I'm going to close this thread not because of anything bad, just that I don't want your concerns to get lost. Thanks for your understanding