[berthegel]

Please , need advice
Not been diagnosed with fybromyalgia yet , but have been referred to a neurologist.
Do any of you have like a fishnet like vision problem over you eyes?

I can't mention any physical symptoms to my doctors , without them stopping me . early last year I even took a printed list of all my symptoms, the doctor didn't even look at , almost screwed it up In fact, I think they are so behind the curve on this.

I think for years I've had something wrong , polymalgia rhuematica , arteritis, vasculitis?

Doctors never delved , but now though I feel a bit like fybromyalgia, I've noticed that as well as leg, hip, neck, shoulder , arm,hand,finger pains, bone pain, fevers and sweats years ago, restless legs, numbness, waking with very numb legs and ( wotsits) this last for a few weeks.

If when trying to sleep, if I lie with head on one side blood vessels in my neck get constricted and jolt me awake , is this a normal thing? Even tiny vessels in my fingers cuase this?
Do any of you have this?

[lizardlady]

berthegel, I'm sorry the docs don't listen to you. I believe that is a common occurrence for folks in this thread. As for the symptoms you mentioned, I have the wide spread pain and sweats, but not the tingling sensation. Seeing a neurologist sounds like a good idea.

[lizardlady]

The last week was the sort I knew was going to trigger a major flare. I was right. Am in serious pain today.

I did a week's worth of work in two days last week because I had to go out of town for a funeral. Drove over three hours Thursday (driving is guaranteed to trigger a flare) to get to the funeral. Then another hour driving around following the cop who lead the funeral procession. I swear to Pete he must have been being paid by the mile. He lead us all over the county before we got to the cemetery. Loaded my truck with firewood that night. Then drove home again on Friday. The return trip took close to four hours because I had to go slow with the firewood in the back.

Yesterday was a full day at the barn, farrier in the morning (didn't help that two of the horses were buttheads and dragged me around the barn. Cleaned stalls. Cleaned the sheaths of all three male horse (you don't wan to know the details if you don't know what that means). And gave the dog a bath.

I am dead today. I swear even my hair hurts. I have to unload the firewood from the truck. I suspect I'm just going to push it out of the bed and stack it some other time. Also have to finish bringing stuff in from the truck. I let most everything in it Friday when I got home. Besides that I'm not doing a dang thing today. House can stay dirty. Clothes can wait to be washed. I knew while I was pushing myself I was going to pay. Well, today is a day to take care of me.

[January]

Well, today is a day to take care of me.

Good for you, Liz. Take good care of you today.

[cakeladie]

I am tired just reading about everything you did.

I am staying in. I woke up yesterday with the worst lupus rash all over my face. I knew I was going into a fibro flare but a lupus one on top of it. I wish I could stick my head in a hole.

take care everyone

[Kiya]

Aw hope you feel better real soon!!!!

[Kiya]

Wow that is a lot, Liz!!! @_@ hope you get some down time.

Originally Posted by cakeladie

I am tired just reading about everything you did.

I am staying in. I woke up yesterday with the worst lupus rash all over my face. I knew I was going into a fibro flare but a lupus one on top of it. I wish I could stick my head in a hole.

take care everyone

oww?

that sounds horrible

how are you today?

[lizardlady]

On top of everything else I had one of those nights last night when I could NOT get to sleep. Every time I laid down my brain went into overdrive. This happens to me a couple of times a year. It's after 8PM Monday night and I've been awake since 10AM Sunday.

Sorry, I seem glued on the pity pot lately.

[~Christina]

Awwww Liz

I hope your able to get some much needed deep restful sleep

[~Christina]

Cakeladie How are you feeling today?

[cakeladie]

I am about ready to give up. My lupus rash on my face is real bad. Saturday when my husband saw me he said "oh god" nice. Last night I was up all night with stomach issues and today even my hair hurts but there are things I need to do. So I am trying to rest then get up and do something rest and then do something.

I wish for just one day of no pain and I could do anything I want without worrying about paying for it later. Between the fibro, lupus and RA it sucks.

Sunny the cat did come in and laid down with me this morning and was licking me. It's nice to get that unconditional love that animals can give.

[cakeladie]

Liz I know the feeling. I try to grab a book or watch TV on those nights. But it's sad when I finely feel like I can fall asleep when it's time for my husband to get up for work. Luckily Sunny the cat will sleep with me and keep me company.

[Kiya]

This is about the only place where people understand "even my hair hurts".
Hoping you get a break and de stress and have days without pain!

[Kiya]

got physical therapy tomorrow... and "deescalating my nervous system"..... I wish her luck with that. I wish me luck, too.
how is everyone?

[~Christina]

I am still uanble to sleep more than 8-10 a week total and of course my pain is still flared all to hell and back! Eventually.... things will improve! Gotta stay positive , right?

Gentle hugs to all

[January]

I want to tell you that since I got my hair cut short, it hasn't hurt and it hurt every day. My headaches aren't as severe either. Maybe all of you could try it. We could be known as "The Society of Short Haired Ladies"

I hated to give up my long hair, but I was desperate.

The rest of me feels horrible right now. I went to the dermatologist yesterday and he said my broken leg threw my immune system into overdrive. So, did it make the fibro worse, too?

[lizardlady]

Jan, I'm already a member of "The Society of Short Haired Ladies." Mine is clipped close to my head in the back and on the sides. Hair on top is 2-3 inches long. I love it!

Not sleeping Sunday night has left me exhausted this week. Add to that we seem to have started our summer afternoon thunder storms, the changes in pressure kill me. I'm one tired out and in pain lizard.

[January]

((((( Liz )))))

Many gentle hugs to you.

I'm sorry the rainstorms make things worse for you. That explains a lot to me. I used to like the rain and still do, but I hurt when it happens and I didn't know why.

I'm so glad you are a member of the Society. It does help, doesn't it?

Cakeladie ----> How are you, dearheart??? How is everyone else?

[Bubbles&Buttercup]

Really hoping I hear back about the unit I applied for today. I need my own place so I can just lay in bed all day when I need to...which I probably will after cleaning, moving and unpacking!
Hope you're all doing well.

[Kiya]

(((((((((Liz, Jan, Cake, Christina, Anyone I missed)))))))

...this "calming my nervous system" thing may do me in... my body hurts tons and I am not able to get any rest today.

thinking of you all.

[cakeladie]

((((((Christina, Liz, Bubbles, Kiya, Jan))))

I am having a really hard time right now. I can't sleep, not eating much and the worst stomach pains ever not to mention the migraines. I also ran out of seizure meds. I forgot to order them in time so I went 2 days without them. I have them now, but now it's trying to get them in my system and stuff.

The short hair sounds like a good idea. I had a year of chemo and lost my hair in 2008. Because lupus also causes hair loss my hair is very thin and you can see my scalp. I just let it grow and either wear a low pony tail or put it up. I would love to cut it short but they are constantly messing with my prednisone. It will go from 10 mgs a day to 60 mgs a day and then taper down. When it's high I get the moon face and I just look so darn ugly.

I am so tired of being sick and then not being able to sleep on top of that.

Sometimes after I take my night meds I get a burst of energy. Has that ever happened to anyone? When that happens I try to do things that I have put off.

Sorry to vent like this.

Bubbles I hope you get the place you looked at. It's nice having your own space.

Take care everyone

[Kiya]

So, I messed up my neck alignment (and we've not worked on proper alignment in 2 weeks). I am going to call first thing in the morning and see if Mollie has a cancellation when I can make it. HOPE HOPE HOPE!!!!!! Otherwise, it will be a full week of poor alignment and head/neck aches.

Sending good and healing thoughts to you all in here!!!

[cakeladie]

I just saw your post about it. Have you tried a hot rice back? I use them or a relax wrap. I have been using the relax wrap the last 2 days. I heat it up and it helps my neck and my migraines. Just a thought.

Take care and I will say a prayer that they can get you in tomorrow.

Originally Posted by Kiya

So, I messed up my neck alignment (and we've not worked on proper alignment in 2 weeks). I am going to call first thing in the morning and see if Mollie has a cancellation when I can make it. HOPE HOPE HOPE!!!!!! Otherwise, it will be a full week of poor alignment and head/neck aches.

Sending good and healing thoughts to you all in here!!!

hope that you can get in for the appointment

a week of kneck ache... sounds no fun at all