I Sometimes feel like a ghost

Support
1

Sometimes, when my brain is in a fog, and my pain from a variety of areas is flaring, I feel like a ghost in my house. I have three kids and an absolutely wonderful husband. But I just feel so disconnected with everything around me because I am SO tired. Today, after getting 7 hours of sleep, after my two oldest kids went to school, I laid down and slept for another hour and a half. I just can't seem to get enough sleep. I feel like I am just going through the motions. I almost feel like I did after I had my last child. I had post partum depression really bad. Except, I don't have the anger outbursts. I don't feel hopeless, but I have this feeling like I am really depressed. I am having trouble exercising because after I do, I get really bad migraines. So, I end up eating and gaining weight. I think I have only gained about 5 pounds, but it feels like 50. I'm sorry to vent, but I don't know where to turn. I don't want to bother my husband, he is already so supportive, he really amazes me every day. Besides, I can't really talk much because of TMJ. I just feel so screwed in every aspect of my life.

Blah!

2

Hi JM, and thanks for writing.

It surely sounds like you may be suffering from depression. You know, depression can manifest in many different ways. I myself get extremely irritable, nasty and feeling blaaaaaaaaaaaaah. And I can't concentrate on anything or hold my tongue when I'm depressed. THANKFULLY there are meds that help depressed people get through our struggles. If you have this feeling that you're depressed, then I would say go with your gut and get it checked out. It's just amazing how anti-depressants can improve our lives, as I'm sure you know.

Do you also have Chronic Fatigue Syndrome? Have you discussed this possibility with your doctor? If not, then maybe you're doing too much and causing yourself to get overly tired. Or maybe you're stressed, which is coming out as exhaustion. But, you know, fibro really does demand a lot of energy from us. And a lot of us need to nap in the afternoon.

Oh, here's another possibility, one that made a big difference in my exhaustion: Do you have a sleep disorder? If you do, chances are that it's affecting your sleep, which, in turn, causes exhaustion. I found out that I needed a C-PAP and once I had it, I was able to stay awake most of the time in the afternoons. Which is kind of too bad because then I'm more aware of the pain again. Can't win, eh?

Many fibro people also get migraines. I don't know why but they do. Obviously, exercise is one of the triggers for your migraines. Is there any kind of exercising that you can do that doesn't cause migraines? It might be worth your while to post this as a separate topic on the discussion board to see if any other people have suggestions for you. You could also try at a migraine board.

TMJ - darn! How awful to have it so bad that you can't talk much! Do you have a mouth guard? Does the TMJ also play into the making of the migraines? I mean, if you're tightening up your muscles while you exercise, maybe the TMJ is set off from the tightening of the muscles, thus causing the migraine. Just a thought.

I hope that some of this has helped a bit. Please feel free to come back and get more of your fibro frustration off your chest. It honestly does help. And no, you're not a ghost, not here or not at your home either. And I'm sure your husband and child would strongly agree that you're a real, living, vital person who's just very ill.

Gentle hugs to you,

Petunia

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Hello, Patunia had a lot of good points! I know what you mean when you say you feel like a ghost. You don’t feel like your really here. I guess like out of body experience. Is that what you mean? I have said that off and on through the years when the fibro fog hits. It happened to me today Infact.

The good thing is that it eventually goes away. It’s just no fun not knowing when it’s going to come back again.

Take care Lisa

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hi jm, i know exactly how you feel, my fatigue is so frustrating.. i can sleep 9,10,11, hrs and im still tired, i can sleep 8 hrs and feel more tired than when i went to bed.it really gets frustrating. If i get less than 8 hrs i literally can not function. my dr does believe i have Chronic Fatigue, and on our next visit we are going to discuss trying a med called provigil, i have also tried adderal but it caused a migraine, so occasionally i take 1/4 of a 10mg tablet it gives me a bit more energy. I am eliminating sugar,because in researching fatigue many suffer from hypoglycemia and this can cause debilitating fatigue.

i also get many migraines, muscle pain/weakness, so as far as exercise warm water PT has helped, as well as 5min on the recumbent bike 2-3 x day.

that oh so familiar Blah feeling is awful... the savella has helped me with that... talk to your dr about all this, depression can cause fatigue,as well as so many other things

hugs& blessings

dee

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Have you ever heard of Ehlers Danlos Syndrome? TMJ is why I'm asking. I was just diagnosed with the Hypermobility type of EDS. I always knew I was double jointed, just didn't know it can (not always though) be an indicator of a connective tissue disorder, especially Ehlers Danlos. My Dad went his whole life without knowing he had EDS. I'm the first in my family to be diagnosed. I didn't even realize I had a high palate and blue sclera (the whites of my eyes are slightly tinged with blue) until one of the doctors I saw for it pointed it out. I knew my teeth were crowded and my jaw popped but I haven't been diagnosed with TMJ as yet. EDS is a genetic connective tissue disorder that causes the body to make faulty collagen. Because we have collagen pretty much everywhere, it can cause any number of symptoms and health issues. I have bad osteoarthritis chronic pain and a lot of other issues.

A lot of people with EDS also have Chiari Syndrome and the main symptom of Chiari is headaches. Here are links about EDS and Chiari.

http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome

http://www.nlm.nih.gov/medlineplus/ehlersdanlossyndrome.html

http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm

Not sure if I should make a separate post about this or not but I just found out yesterday that Ben and Scott are creating a separate site for Ehlers Danlos Syndrome, so there will be a forum/site like this one for EDS. I was tickled pink to find that out.

hugs

Susan W

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Wow… I can relate to EVERYTHING that’s been posted on this subject. Just ‘going through the motions’ of every day… Being SO TIRED no matter HOW much you sleep… Every day, when I wake up I wonder ‘how am I going to survive this day’?.. I walk around in a FOG and try to do my best… Being EXHAUSTED all the time really sucks… What helps me is to be KIND to myself… Knowing I don’t HAVE to be ‘perfect’… Taking things a bit slower and giving myself a break…
Luckily, my kids are grown and in their own… But, I can remember trying to ‘manage’ while they were kids… It was HARD! I took naps ANYTIME I could!

I recently had a sleep study and need a CPAP therapy device… I HATE the idea of sleeping with a machine strapped to my face!!! How ‘sexy’ is that?? But, if it helps me have more energy, I’ll do it… I’ve heard that CPAP can really change the way you feel… Give you more energy, etc… I’m TIRED ALL THE TIME… it doesn’t matter HOW many hours I sleep…

One thing I’ve done recently is, I started a vitamin B-Complex for stress… It’s REALLY helped!!! I would try this!! I feel more ALIVE and FAR less stressed!!

Blessings,
Diana

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Hi JM, I feel the same way I feel very disconnected from my family, at times my kids find it hilarious when I jumble my words or completely forget a conversation 10 to 20 mins later, My husband and I are not really getting along at the moment when my pain gets bad I end up snapping when I don’t mean too then he will snap at me and then I get even more upset. I feel invisible in my own home. I have a full time job and I try too do the best I can while I’m at work but when I get home I feel like I’m dying and just want too lye down my husband thinks I’m being lazy but I’m not I don’t even feel like working full time anymore I just don’t have the energy. Hugs Melissa

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I can relate to everyone’s stories. I have felt the same way. Always tired, never feel rested, feel like I’m barely alive. I also work full time and its extremely difficult. Wish there was a cure for this. Gentle hugs to all. Connie

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What a wonderful way of putting it! Feeling like a ghost! I am looking for words to say to my family when they look at me and say “you look so good” how can you feel so bad? Now get up and stop moping around and withdrawing!

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Thank you for all the support! I do take Zoloft for depression. On top of Fibro, I also have ADD. Let me tell you, this combination is not cool (I'm thinking of Despicable Me when I say this). I take Adderall in the morning along with Zoloft and Valporic Acid (for headaches). The TMJ is new, and I am going in on Monday for PT. What worries me the most is my kids. I am worried that they are going to think that I don't care about them. I tell them I love them all the time, and my two oldest children understand-at least I think they understand. I am going to talk with a psychologist who specializes in fibro patients in two weeks-she is one of those doctors who is really hard to get an appointment with.

I know a lot of advice is to not ask "Why me?", but I can't stop asking this. I use to be so active. I ran half marathons. I sometimes can't even think about walking around the block let alone running 13.1 miles! I was also a gymnast for 12 years. Flexible, nimble, strong. And now, bending over is a chore. I hate it. I am normally a really positive person. I am normally really optimistic. I want to believe our delayed spring here in Minnesota is to blame for some of this feeling-having all these dreary snowy days. Today, it is suppose to be 70, so lets hope that it also brightens my mood!

Thank you for all of your support! I am so happy that I found this site! I don't know what I would do without it.

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Antidepressants can actually help with fibromyalgia. I am on Cymbalta, and without it, I am a "ghost with a cloud over her". It's a lower dose than is used for true depression, but for some reason, it balances the brain and helps with fibro.

The rheumatologist should be told about your difficulty getting good sleep. Although I also have sleep apnea, the biggest culprit is lack of REM sleep - I get 0% of what is needed. A sleep study might help check for the quality of sleep. Anyone who is sleep deprived will feel disconnected and function only on auto-pilot.

As for exercise-induced migraines, have you tried soft stretching? I have a flexercise DVD and a yoga DVD (that last one is adapted for anyone like us). What kind of exercise are you doing? I also have an exercise bike, but I no longer use the resistance or measure my speed. I move because it feels good - and that's a statement you won't hear from me very often!

Our husbands must be loving the irony - you can't talk alot because of TMJ, I can't talk alot because with fibro fog, I can't find my words. (Just laughing at irony...I know our husbands don't like to see us in pain.)

Hang in there!

12

Hey jmhaag,

I am so sorry you are going through all of this. I really do have a LOT of empathy for you.
I also experience the extreme fatigue and ghost-like feelings. I am not sure if that is the fibro fog or that and a combination of not sleeping which tends to make the fbro symptoms worse.
One of the best things I was ever told (and yes this does take some practice) is to put your needs first and not push beyond your limitations. If you are exhausted, please don't feel bad about taking a nap or just some you time to try and regather your thoughts and balance.

I also relate to your experiences with working out. Quite honestly the best I can do most of the time is try to eat well (I avoid gluten products and sugar as it seems to make my fibro flare ups even worse), and if I'm feeling well enough,I do something low key like a relaxing walk or yoga.

I am so glad you have your supportive husband and that you also have this support group. You are in my thoughts and prayers! (gentle hugs)