Old 02-09-2017, 03:18 AM #1 (permalink)
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Hello, I am new here. I am not new to fibro. I am also not new to auto-immune illness.
I am learning though now that often it is the fibro that disrupts my life the most.
I have only just learned that fibro can be the cause of mood changes.
For over a month I have been experiencing the terrible pain and fatigue.
I can do nothing I am too tired. I can't sleep I hurt too much.
Then there is the confusing emotional upset that feels so awful
I feel anxious and then because I can't figure out where it's coming from I feel scarred. I think am I losing my mind? To make things worse it always seems the worst at night and when I am alone. I guess it's because through the day my mind is occupied with other things so my mind can't dwell on things.
I deal with allot health wise, hypothyroid, Addison's, sjogren's, immuno deficiency and lupus and finally since the spring, ITP/low platelets caused by my wonky immune system. Tons of prednisone for months did not help so chemo was the next step. I have done three rounds in January with one more to go.
So the stress of the last month let alone the past year...well it's been too much I think. Thus the fibro/cone give tissue/lupus flare.
I have a great rheumy who I saw today. She confirmed the fibro flare with the
Pressure points and history. I was given some muscle relaxants and some anti-inflamitories to try. I also have a small arsenal of other medications I can use.
But you know nothing really to handle the anxiety/emotional stuff.
Pain wears you out. Not sleeping wears you out so pain management is very important. But I sure would like to feel at peace inside too.
I ask what do you do for this difficult symptom.
Thanks so much. Daylilly
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Old 02-09-2017, 03:48 AM #2 (permalink)
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Default Re: Peace

First of all welcome to the forum. And as you can see, (though I don't know if it helps to know), you are not alone. The pain and the fatigue....it is our life.

Personally, especially with so many disorders it is very very important to find a doctor that listens to you and is committed to helping you.

As many of us here, I have not yet found the doctor for me, in fact my last visit was so bad that I have avoided doctors and hospitals for almost 3 years now. I get my meds from a GP and because she is quite open minded about trying out different meds, I finally found a muscle relaxant that is now my go-to solution for a good night's sleep. I don't take the muscle relaxant every night (it is quite strong, it knocks my whole body out if I take the whole pill), am trying to keep it as potent as possible for days that I do take it, but it truly makes a HUGE difference. If not physically, mentally...

And you know it all starts with a good night's sleep. Talk to your doctor, try different medications (it could even be sleeping pills/anxiety pills etc). Try and see what works best for you. The solution often comes in small steps and it takes months, if not years. Different bed, trying out many many pillows, many different sleeping positions etc.

I have also been listening to meditation recordings on my phone. They are only 10 minutes long and I do them right before going to bed. I also always read books before falling asleep, making sure my mind is not here in my life, but in a totally different place.

It is very important to not give up and give everything a chance. You just never know what will work for you. Wish you lots of strength!
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Old 02-09-2017, 07:55 AM #3 (permalink)
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Default Re: Peace

Thank you for your reply. I too have muscle relaxants. One, cylobenzaprene is so strong that I cannot wake up the next day. So yesterday when I spoke with my rheumy she gave me a prescription for a new one that she thought might be less lingering. I am glad to hear the relaxants work for you.
I have been niave about fibro, with everything else and the fact that it is not always present I kind of put it out of my mind. I do that with allot of my health situations, living it all in real-time is difficult to handle. I really do quite well all in all and have a good life. But
now I know what this torment is and I need to take it more seriously. So does my hubby. We are the kind that never stop and from what I have read running on empty and past is just not
how to deal with fibro.
I am so grateful fortis forum, I feel less alone now, and less alone is much less scary.
XO Daylilly
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Old 02-09-2017, 12:32 PM #4 (permalink)
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Default Re: Peace

Hi Daylily. This is such a tough journey, that I think anxiety is pretty much expected ... lack of sleep and pain will definitely contribute, but so will life changes and a the uncertainty of the future. I think it's important to treat the anxiety itself, and not just assume it's a side effect of the autoimmune disorders (ykwim?). Medication for anxiety really calmed down those jagged edges and helped me feel more even and in-control. I also did counselling (just a couple of sessions as I'd done extensive counselling previously and felt I just needed a few reminders). I'm in Ontario, too, and I know that our area has free mental health services available for adults through the community health services. Might be something to think about. I also found that the anti-anxiety med helped my pain a little bit (maybe just because I wasn't so crazy insanely hair-ripping out anxious that my nervous system was in over-drive). You sound like you're about in the same place as I am, fibro-wise. I've been staving it off the past few years by just never stopping until I crashed and keeping things going with caffiene. Being forced to stop, being forced to pace, being forced to take breaks, having to face that this is real and that my future looks very different from the plan... that's all been really hard. I'm slowly getting there, but just before Christmas I was feeling better (the new meds) and of course convinced myself that I was better ... overdid...back to the couch.
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Old 02-09-2017, 09:36 PM #5 (permalink)
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Default Re: Peace

I have also not found a good doctor to get good treatment for the fibro yet and have not learned yet in the 6 months since my diagnosis how to pace myself. It is hard to go from an active, always doing something lifestyle to not pushing too hard. I also have started dealing with depression due to my new limits. The new doctor I saw this week has prescribed me an antidepressant to help with the low moods and anxiety that bother me. Hopefully, they will help but, as with most medications, it will take time to determine if they make a difference. You may want to talk to your doctor about something to help with the anxiety and emotional distress if it is effecting you so deeply. I am definitely familiar with the exhaustion and also inability to sleep due to pain you mentioned. This forum has helped me not feel as alone in dealing with everything, so I'm glad it is already helping you as well. It is a great place to vent, question, and to be understood.
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Old 02-10-2017, 06:32 AM #6 (permalink)
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Default Re: Peace

Good Morning all, it is a good morning too with so much support. Thank You.
Well I tried my new meds last night, which is not easy for me as I really struggle with medication, but as I mentioned my rheumy is very good we have been together since 2006 and she has got me through some pretty rough times. So the new muscle relaxant worked okay, but took about 3 hours, and I still have the neck/head pain this morning but I did sleep. Plus unlike the cyclobenzaprene I feel awake and quite alert so that matters allot.
I also started the anti inflammatory. It scares me as it can cause bleeding in th GI tract...I have ITP/low platelets and bleeding is dangerous for me. But I eat a good amount with it. I was told I can use it on an as needed basis so I can watch the tummy agrivation and stop it if I need to.
I do have anxiety medication but I only ever use it in very small doses to help with sleep. It a half tablet knocks me out cold.
The knowledge that it is normal to feel anxiety or even sad when dealing with this stuff helps enormously. I tend to blame myself which is what causes the fear. Guilt is a useless emotion in this situation. So now that's gone and I can work on the anxiety of having to accept the fact that to get better I must be much easier on myself and my body.
It's lonely though isn't it? Loafing around the house alone when the rest of the world is out accomplishing and seeing people. That will be the hard part.
I try not to, but sometimes I can't help ask "why does my body act this way, why did this have to happen to me?"
Thanks again for your tips and support. Daylilly
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Old 02-10-2017, 08:54 AM #7 (permalink)
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Default Re: Peace

It is very lonely!! I am lucky to have a supportive spouse, mom and in-laws, but friends and siblings not so much. I find people really don't want to talk or ask about ill health. I was feeling really down about that yesterday, but then a neighbour popped by collecting for heart and stroke. I don't know her very well, but apparently my dh mentioned to her about my health and she chatted to me for quite a long time about it and said, 'If you ever need anything at all, please let us know.' Nearly burst into tears - just that little bit of kindness and understanding.
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