Hi All,
I'm new to this forum but I've had RA for going on 2 years now. I'm 25 and although my RA seems to be in remission (which means i dont have any stiffness, swelling and joint pain) I am dealing with major fatigue. I am always sooooo exhausted. Yesterday, I think my fatigue peaked. I was so extremely tired and it just put me in a horrible mood. I tried to go to sleep early but after falling alseep for 10 minutes I was wide awake and could not sleep AT ALL for the rest of the night. At this moment I am sleep deprived and just tired tired tired of being tired all the time. I'm at work right now and I feel like just breaking down and crying cause I'm finally realizing that although the joint pain is under control, I still have to deal with the extreme fatigue that comes with RA. I thought that maybe I was so tired becuase I couldnt sleep well, which I realize now has only helped to make me more tired. I work out regularly, and am eating very healthy these days...but it seems like the fatigue is worsening. I'm tired all the time so I rest alot, but I try to get my workouts in so that Im not sedentary all the time. I'm 25 and I feel like I have the energy of an 85 year old. Even some 85 year olds probably have more energy than I do. I'm writing in today, I guess becuase I'm just looking for some suggestions, and most of all some support.
Sarah
I am 45 and have often thought about how hard it would have been to get this disease when I was younger. Are you on any medication to help you deal with the psychological aspects of chronic illness. That might sound extreme but if your loosing sleep not because of pain but because your mind will not slow down, it might help. Maybe xanax or ambien for sleep/anxiety? You must learn how to conserve energy for the important things in your life. I know you have had this disease for 2 years and you think you are in remission. Has your doc stated that you are in clinical remission? you have no swelling or any signs of RA?I guess i thought that once I was over my divorce I would start feeling better, and I would have more energy. BUt that has not been the case and it just has helped to make me even more aware that I have a chronic disease that affects not only my joints, but every part of my life. I havent been really good about accepting the fact that I have arthritis...so for the most part I attributed all the fatigue and depression to the divorce. BUt now...i have no choice but to fully accept that I have a disease that is causing this extreme fatigue and in turn is making me really sad. It's hard to feel happy about life when you feel physically run down, even if things are getting better.I'll talk to my therapist about my options and what she thinks..
Sarah
lunajewel, in addition to your loss of your marriage, you may be grieving your loss of not having a disease. As humans, we grieve over any loss in our life, anything we value that we no longer have such as energy! Just because you think you've had adequate time to grieve your loss of marriage, you may still be greiving other things in your life that was attached to that marriage such as the financial aspects, living alone (or not with a partner), adjustment to the single scene (especially with no energy). Don't be too hard on yourself - any loss and any disease that is life long is a lot to come to terms with.
LunaJ-I am sorry to hear that you are feeling so bad. It sounds like you really had a ton of stress. Keep in mind that even the healthiest people get physically ill in situations like yours. Sleeping difficulty is common for people under stress, plus Ill bet your whole routine at night is totally diff. now that you are not married. I hope things begin to smooth over for you and that you get a good nights sleep tonight!
try watching c-span, major snor!I am sorry things are so rough right now. I can say with
confidence, I feel much of your pain. I am 33 and it has been
really hard for me to accept this too. I have only had it for a
few months. I am not even properly diagnosed yet, but all the
signs are there and my mother has it. I have had a much harder
time with the mental battle than the physical pain. Everytime I
see a girl my age in cute pair of shoes, I die a little inside. I
have been morning all the things I can't do here and there. I
know that I will come to accept and embrace my life and hopefully get
some better treatment some day, but that is the ugly hard part of
disease. I try to remind myself that I could be dying of cancer
and that this is a better alternative to so many worse fates.
I have been learning about anemia and thyroid as being causes of
exhaustion and fatigue, along with the RA. I don't know how
thyroid connects to it, but I believe anemia can come about with
prolonged use of anti-inflammatories. Perhaps you can have those
looked at. I hate feeling so old.
Another thing, when you have a good day, it is so easy to overdo it
because you feel so good, then you pay for it for the next few
days.
Doh. Sorry to hear about all your struggles. I'm in the same boat. And yes, being so freakin tired all the time sucks. I hate it, feels like I'm about to pass out any minute.
What helps me is literally forcing myself up & outside. I go for a short walk, even if it hurts. Ironically, it helps. Also drinking a lot more water may help.
Sarah,
I'm 23 and I know what you're dealing with. I travel(led) for my job... but now I'm tapering that off because I can't handle it physically. (I'm definitely not in remission, yet) The days in the office are killer. By mid afternoon, and sometimes even earlier I am literally falling asleep at my desk! I started yoga, when I can handle the pain. Another suggestion: take naps! I was having major difficulty sleeping at night too, but for some reason that has improved. I live near work so I try to go home to eat lunch and I schedule a full 30min nap so I am somewhat refreshed to go back to the office. Maybe you could even ask your employer for shorter work hours or for a longer lunch hour in order to get a nap in? Hope this helps! Also, make small goals for yourself at work so you are constantly achieving SOMETHING. Get a small cup for water too, and get up frequently to fill it. This is healthy for you, and it will keep you occupied (especially once it kicks in and you need to use the ladies' room! haha).
Keep your chin up! Trish
To me, fatigue is the worse part of this disease. It's a symptom of our disease, not neccessarily stress. For me, the answer has been Amatripilene, a mild antidepressant used mostly for sleep and muscle relaxing. I take 50mg before bed (as much as 2 hrs.) And I sleep longer and better than before. The strong stuff really didn't help me at all.
Hope you're soon much better
Lunajewel,
I would give melatonin a try to help you sleep. It is a natural supplement that has no side affects unless you are dx'ed with depression. If you have depression you will want to avoid all sleep aides. Do you work out late in the day? I find working out to late or even drinking coffee after noon keeps me up all night. Arizonara was right about the thyroid and anemia. Get your hemoglobin checked and see if you have anemia. A multi vitamin with Iron can do wonders. People with Ra (auto immune) are prone to hypothyroidism (another auto immune disease) and an Iodine supplement can also do wonders in this case.
I have lots of fatigue which seems much worse on the weekend. It seems to cycle somewhat with when I take my mtx and my Enbrel. I also have Fibomyalgia. Have they examined you for that because there are a lot of new medicines out there to treat it.
Also, have the doctor look for some other problems which I had and definitely affected my sleep. Restless legs is very common. I also have sleep apnea. You might not even realize you have these problems that the way to test for them is a sleep study. The treatment for sleep apnea is a breathing machine and it can make a tremendous difference. For the restless legs they have me on nortripline (a very mild antidepressant) and clonazapam (an anti-anxiety medication). What they do is put you in deep rem sleep. This is what we need to let our bodies heal.
Before they took these steps, I had to quit working because I was so flared and so exhausted.
Pacing is important. I now go by what must be done today. Everything after that is bonus. Work is extremely hard for me. Sometimes eating a little something in the afternoon helps me get through the rest of the day. I've heard others say that they sit in the bathroom and take a five minute nap. I can't do that.
Everyone is right about the grieving. I grieve every day as my body seems to come up with new surprises and I find myself less capable of doing the simplest of things. It doesn't help because you don't really look sick, but indeed you are. People don't get it.
Lunajewel, I am brand new to this board (found it via google search re RA info today) but can really relate to your situation.
My divorce was recently finalized. I have had "RA like" symptoms for approx 6 yrs and I am in a terrible flare up right now. I am in upper 30's but like most people with RA, feel like 75. Recent MRI's show bone erosions in both hands so I am preparing for my next RD visit by reading up on DMARDs and other treatments.
In any event, my suggestion is to try to remember that we cannot control the how the disease works but we can control how it effects us! Yes I know, so much easier said than done. Even in my terrible times (like now) I have to admit that its hard to follow this quote. I also admit that even when good things in life happen to me now, its hard to appreciate them when I am so physically exhausted, in pain.
However, I remind myself that I never know what is going to "come around the corner", good or bad and why concentrate on the past? Both Divorce and optaining a Chronic Life Long Disease are extremely life altering events. Like some of the others have suggested, what has helped me lately is to SLOW DOWN, embrace my physical shortcomings and try to set small goals towards a future.
I also find that going for short walks, or visiting a pet store or even calling my grandmother are things that make me feel better (mentally). I find that by staying home, sitting around, consumed by the physical pain/stiffness does not help the mental aspect and thus also makes the pain/fatigue worse. I am not very religous but I do occasionally ask god for the strength to continue and to show me the way.
Hope this helps and best wishes
Sarah,
I have just read the posts from everyone and I want to thank you for your honesty. I have just found this message board and I think I am going to get some support from you all. I am 66, overweight, diabetic, OA, asthma.........you name it. This week I started a program at the YMCA and I also asked the doctor for Celebrex so I could move. I am so stiff in the morning I feel 100 and the fatigue is overwhelming. I feel so badly for you young gals who have to go to work and pretend you are okay to your colleagues. Thanks for your help.
Mary Ann
Reading these messages always make me feel better. Sometimes it feels like no one understands how it feels. Sometimes it hurts just to get out of bed. Sometimes it hurts doing nothing.
Lately it seems like I get no relief and always always tired. I am 47 yrs. old and feel 80. I was diagnosed at 6 mos. with RA in my knees. I did not walk till I was 2. I was also very small. I only weighed 12 lbs at a yr. old.
I also have hypothyroidism. This causes many other problems such as weight that doesn't help. My parents never told me about the RA until 5 yrs. ago when I was diagnosed a second time, however he said it wasn't in the inflamatory stage, but had extreme fatigue and terrible muscle cramps especilly in my feet along with Reynaulds syndrome. I hope I spelled that right.
I live in a small town so specialist are a long way away, money and time makes those trips difficult if not impossible.
Thanks for listening.
I know exactly what you mean with the fatigue. I'm 20 now, but was diagnosed at 16 and i still find being tired all the time a constant struggle I had to quit work. To make it worse on top of that i have an iron deficiency which doesn't help
You not off topic. This is common. It's hard for those close to us to understand. You have to educate them and let them know when you need to rest. It takes time for them to adjust because they are losing something too. But with time, it can get better.
Another warm hello to all!
WOW! Amazing! Everyone is being very honest, which is fantastic! I also had found this forum via a google search recently. I am confused as to the identity of the owner, etc.
FATIGUE! OH MY GOODNESS! My heart goes out to every single person here.
I was determined to be completely medically disabled 22 years ago. I was diagnosed with hypothyroidism, CFS/ME (with abnormal brain scans), severe migraine, asthma, etc. The list went on and on! Yet, i was an athlete and very healthy until I'd had "mono' and had never gotten over it. I had participated in medical studies on CFID/CFIDS/ME with a researcher then. I have since developed small fiber neuropathies, severe OA, "Spurs" in my spine (growing in toward spinal cord), nerve demylenation, antiphospholipid antibody syndrome,and Pain! The pain and the fatigue really frustrate me, too.
I have been on plaquenil for 3 years now, after having been on prednisone episodically for several years. I'm still on low dose prednisone. Also on morphine, dilaudid, etc. for pain. Have tried so many pain adjunctive meds that just make me even more tired! Wow! (These are like the anti-epileptic drugs that are often used to help control pain, too.) I stay on meds for depression all of the time, because it's easier than trying to "catch up" with depression if it gets a start! In that category, I have found WelbutrinSR helpful energy-wise. I have found Celexa helpful with pain.
For fatigue itself, I have tried so many things! The very best for me is dextroamphetamine. It is also used for attention deficit and narcolepsy. I truly cannot function without a major stimulant. It has been a very long haul now...22 years.
The Plaquenil is "keeping some rheumatological condition from coming into full fruition." Doc cannot tel just what it is yet. Thinks either lupus, R.A. and maybe more...as you all know.
I have more meds on the "list." Don't need to mention them all.
I have very good luck with a topical "compunded" ketoprofen/bupivicaine cream. It absorbs nto the joint I rub it into. I cannot take systemic anit-inflammatories, as I have had GI bleeds from them... even the cox 2's. Additionally, the pain is sooo bad, I am taking 90mg.morphine throughout the day/night. Also need dilaudid as an adjunct for pain.
For fatigue, I would suggest seeing if your doctor will let you slowly try some Ritalin, some Provigil or some dextroamphetamine. For me, at this time, there is no other way. It's not unusual for docs to utilize these drugs as adjuncts to depression meds, as well.
How do we all do it? What motivates us to continue to "fight" for our lives?
We each are important. Our lives are not as we would have liked them to be. Yet, we are not without purpose. Why do we choose to continue with all of the fatigue and the pain?
I'd wanted to quit 21 years ago, 20 years ago, etc. I'd had a very good doctor who was able to spend a great deal of time with me. She taught me of my worth...even if I had lost my career, my "identity," etc. I had to take the time to discover who I was, who I am now.
It's not an easy life. Yet, I am glad she was able to get through to me then. I've had another 20 years or so of life experiences. I have found myself. I have accepted myself. I have become a more 'spiritual" person. I am also more "crippled up" and in more pain than ever now. We will have some times in life better than others. Hopefully more will be discovered about how to successfuly treat these illnesses as time goes on.
We should "talk" more about this, as I think we all struggle with this at times! Why go another day in pain? Can I be truly "hopeful?" Or am I deluding myself?
What are we hoping for? What do we hope for ourselves? What do we hope for others? Thankfully, our illnesses are not our entire identities! We have much to add to life, much to offer others, much to adjust to. I know, despite the dark night of the soul when mourning so much, we can support one another. We can chose life... even if just day-by-day when we are so sad.
There is hope! Each of us is here, in hopes of discovering how to make our lives work despite pain, fatigue, illness. Isn't that why we are here? We can help one another make it through, if we choose to!
I hope you can find your inner peace right now and just "relax" in it for awhile?
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