Chronic illness taking over

Posted , 6 users are following.

Hey everyone!

I have been experiencing fatigue, all over pain sometimes it's sharp shooting pain, headaches, eye pain. Back and beck pain, and brain fog. I wanna here from people that have similar symptoms. What have you been diagnosed with and how is it being treated or managed?

Here is my back story and it's quite long:

In 2013 I started getting tired and a few months later I started experiencing extreme fatigue and pain. I went to 3 providers and they all did basic testing and told me to just lose weight. The fourth one did some more testing in 2015 because I forced her. Got referred to a rheumatologist since I had a positive Ana along with symptoms.

While I was waiting for the rheumatologist appt I went to a psychiatrist just to be sure he diagnosed me with depression and social anxiety and he said that's because my blood doesn't show any. I honestly felt depressed because of all the fatigue and pain. The antidepressants didn't help.

The rheumatologist tested me for a lot of things. All my blood work was normal except positive Ana and presence of Epstein Barr virus. This was back in 2015. He diagnosed me with fibromyalgia and mild symptoms of lupus (not from blood results but based on symptoms). I have been on many different medicines and nothing has helped so I just wanna here from y'all.

Thank you,

Lady in pain.

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  • Posted

    So sorry to hear that nothing has been helping your symptoms. I was diagnosed with CFS by an infectious disease doctor about 25 years ago. He attributed my symptoms to the HV6 virus and prescribed my an anti-viral medication. I think it helped some, but what I found helped the most was a trycyclic anti-depressant that helps promote sleep. It is believed that many people who suffer from CFS do not get the proper sleep or REM sleep and this drug at a low dosage helps with that. It is called Doxepin.

    As far as the pain you are experiencing, I haven't had that. I do suffer from headaches, brain fog, fatigue that fluctuates, and generalized weakness. 

    There is a new drug that has been approved for fibromyalgia. I'm surprised your Rheumatologist didn't tell you about it or suggest trying it or maybe you did try it.

    As far as the depression, feeling exhausted all or most of the time can make you very depressed. I think having an experienced professional (therapist) to help guide you and suggest some good relaxation techniques is helpful. 

    Try to pace yourself and allow time for rest. Light exercise can be helpul in some cases but not all. Hope you get some releif soon! KPD

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    • Posted

      Has Doxepin helped you with sleep long-term? I found that it lost efficacy as time passed. Now it has no effect on my sleep, and I'll probably get off it. 

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    • Posted

      Hi Jackie,

      I do think that you can build up a tolerance to the low dosage, and at times it helps to increse the dosage from 10mg to 20mg-which is still very low. 

      I also take Xanax as needed which helps sleeping. I've tried getting off of these drugs, but then I end up not sleeping well at all, so I do think they must  be helping.

      You may want to try to get off of it and see how it goes. I've heard that some people benefit from Melantonin-a more natural sleep aid, but I have not. I do, however, think that sleep is critical, and it affects how my over-all attitutude and symptoms the next day. Good luck! KPD

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    • Posted

      I tried increasing Doxepin dosage and could not. Had bad side effects. I was on Ativan for years (same category of drug as Xanax); then it, too, lost efficacy. Also created huge amounts of anxiety and was terrible to get off of. I mean, one of the worst experiences of my life. Melatonin and Valerian did not help. Neither did Benadryl. So these days, when I can't sleep, I just get up and read.

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    • Posted

      Hi, I do think I don't sleep well. I haven't seen an infectious disease specialist but I'll ask my PCP for a referral.

      My rheumatologist did give me gabapentin (sp?) is that the one known for fibro? It didn't help sad

      Yeah I'm sure my depression is a symptom than the cause. I can't go to therapy now because I'm not telling my doctors about it since they'll blame it on that.

      Thank you!!

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  • Posted

    I, too, had some positive ANA markers. But my rheumatologist did some very specific further blood tests, and determined that I did not have lupus. Also, regarding depression and anxiety and this illness, it's a bit complicated. First of all, many doctors try to fob off symptoms of ME/CFS as being "just" depression or anxiety. This, despite the fact that so many of us want to get out and do stuff, but can't. This is the opposite of depression, where one doesn't want to do anything. But also, to complicate matters, my doctor said that ME/CFS, because of what it does to the brain, could actually be causing symptoms like anxiety (not sure about depression). Also, people can understandably be depressed or anxiety because of the restrictions and problems ME/CFS causes in their life. They could also have pre-existing depression and anxiety, in addition to ME/CFS. In any case, there is no cure for ME/CFS. There are some drugs available to treat fibro, like Lyrica. For ME/CFS, what seems to help is plenty of rest and pacing. Don't try to push through the fatigue, as that can make you worse.

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  • Posted

    Hi there, I truly feel for you since I'm basically in the same boat.  It's hard and I have just been feeling sorry for myself this particular weekend!  I must say though, that I am better than when I first started having severe symptoms in late summer/fall 2013.  If you are interested I could private message to you the name of a book that has lots of thorough info that has helped me a lot.  I think that if I put the name of the book here the site would probably moderate it.

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