Fibromyalgia

[momofdrew]

Oh my I never thought there would be so many of you out there...You know you always feel as if you are all alone with this pain...
I was practically born with CF... I can count on one hand how many times I have woken up refreshed in my life time...I have Raynauds, Hives, Fibro, degenritive[sp] arthritis in my hips and lower spine...I get wicked charlie horses in my feet at night if I have been on them too much during the day...and wake every day with neck pain and headache..
I take Ambin, Celexa, Celebrex, and Tylenol...my doctor tells me not to touch iburprophin or Advil as I have reflux, an hyatil [sp] hernia and he is afraid it will eat my stomach...
When I first started going to doctors they said it was all in my head... doctor dx me 16 years ago...I have tried just about everything, holistic was a joke, I couldnt name all the pills I have tried...really fibro fog... I cant remember what I had for supper 2 days ago... I find mild yoga helps me...
It is hard to not be able to do things you used to be able to do...SUPER MOM is no longer in the house...I do what I can and don't get upset about the things I can no longer do...if people dont like what my house looks like then tough...they can come clean it for me...DH does a lot to help after working 60 some hours a week he will do laundry vac pull weeds what ever I cant do that day...

Pam

 

[Jena]

Hi Pam,

I think we are showing that this thread is of value.

it has been so good for me to find all of you.

I have also had the "All in your head" attitude and not just from the medics.

I am so grateful to talk to all of you.

many thanks.

Jena.

 

[momofdrew]

Jena...yeah it was difficult before people realized that I wasnt faking it...MIL especially took a few years to accept my condition...that's an whole other story

LOL


Pam

 

[Jena]

Hi Pam,

I am sure, it must have been so difficult.

To be honest my own mother used to be so nasty about it and then she was herself diagnosed. Kind of took the wind out of her sails. But she quickly decided that her pain was different to mine. lol...

But my son was really surprised last night. I only ever see him in my own home really, and after I had spent a few hours in his house last night and then waited in the car for an hour while hewas doing some business, by the time I reached home I was very stiff.

He had never seen me like that before and was really shocked.

I always deal with things alone so often they only get it second hand and I hate to winge, but sometimes I think having their eyes open does them some good.

Take care and stay well.

Jena.

 

[skirbo]

One thing I discovered recently (when they added a water pill to my pharmaceutical cornucopia) is that potassium tablets help my muscle spasms/soreness. Less than 24 hours after I took my first water pill I had horrible cramps. Which made both me and the doctor realize that I must be pretty low on it to begin with.

I take potassium twice a day when I can remember to do so. Of course, I forgot until I mentioned it, so I guess I'll go get it now.

Sarah

 

[spook]

Oh yes Sara, with these "ailments", I believe we are all individual, yet there has to be something that connects with each of us. Low potassium, calcium, magnesium (don't increase these without blood work as they can be harmful), when low, you will have muscle spasms and charlie horses. Also these muscle spasms can happen to your heart as these 3 vitamins (?) are very important to the heart as it is a muscle to.
Muscle spasms are part of the Fibro conditions, my doc has me on 20 mg Flexeril for muscle spasms. Holy Hannah, I never knew how little I slept and why- also sitting on the toilet was so painful! When my legs would come in contact, they would charlie horse up!

You guys are right about people not believing you. I recall as a teen, 12-19 working on the farm, summer was slightly painful, but come fall I'd start slowing down, then winter was the most excruciating pain that I would have to endure. Walking. Its like I didn't feel my feet, only the pain in them. I'd hobble here and there, my mind was active like a teen, but the body was against everything.
Of course having severe psoriasis on my hands and feet that was being ignored, no dermatologists in Maine at that time. So I was mistreated, creating more issues. Which leaves me a form of psoriasis called Pustular Psoriasis where the body thinks its infected all the time. Also, untreated it will cause deep blisters that run through the meat of the hands. I'd be awake night and day, not able to use a comb, toothbrush or even zip or button- heck tie shoes. I would have to wrap a wash cloth around the handles to be able to use them, that was as far as I could grasp with my swollen horrible looking hands.
Being treated for my psoriatic arthritis - connective tissue, Ankylosing spondylitis, its been a blessing as the side effect is no more psoriasis, although I do have flair ups as everyone does. I take Methotrexate too.
For the first time I could walk outdoors in winter was at 42, I am 43 about to be 44 (in a few months). I swear if it wasn't for those chickens and cats, I'd be in the nut house.
A month or so ago I was trying to help DH do something with my fingers that do not have much nerve sensory left in them, it was zero each day which slows us all down making unhappy, I sat down on the snow bank and cried. He sat down beside me. Never said a word until I stopped crying. And then he reminded me that this is something I go through, "old is not your friend, we know that, so don't even go there, you have a legit issue, its workable."
myself that I just want to end it all (not really but we all get so frustrated).
I feel like I need some cheese, a few crackers too to go with the whine!

 

[curliet]

Quote:
Jena, you have hit on something important. Most of us try to tell our families how we feel, but they can't see a source for the pain we claim to have (not like having a broken arm, or something obvious) so they dismiss it. After having people refuse to acknowledge how you feel, you begin to keep it to yourself and suffer in silence.

In my case, I'm at home, and my DH works all day, and kids are all grown up and gone. So no one usually sees what I go through during the day. Recently my DH has been laid off and has had to deal with the days that I can't make it up and down the basement steps to do laundry, or sometimes just can hardly get out of bed. Watching me struggle led to him asking more questions about the FM, and gave me the opportunity to tell him how I really felt.
I also gave him several items from the internet that he finally took the time to read. He had previously come to the point where he did accept the FM, but had never really seen the effects of it. Now he's much more sympathetic and seems to understand about the weather, and other triggers. He always asks me now whether something I'm doing is something I need help with. He does laundry a lot, and dishes as well. And I've heard him mention to the kids that some things are difficult for me, reminding them that the old super-mom is not there anymore.
But, if I say that I feel well enough to do my own chores, he stands back and lets me be as independent as possible.

Finding a way to share your daily life with family makes a lot of difference I think. It's not enough just to say to them "I hurt all over."

 

[Ferngully]

Spook, we all have our days when we want to, or simply just do cry. The chronic pain, numbness, tingling, pins and needle pain, near nonexistant nerve feelings in areas at times, and poor muscle strength and coordination can easily lead to a sad day. Is it any wonder that the professionals say we often develop depression. If I had a dollar(inflation) for every cup of coffee I couldn't hold in my hand or dropped, wall or corner I smacked into because I misjudged it or loss my balance I would own a bunch more chickens. lol. Daily work around the home and at work is always difficult and I am glad you have a DH who is understanding and supportive as is mine. I am thankful everyday for having him because I know there are others out there who do not have this support both emotionally and physically.

Passes you the cheese and crackers and sits down to join you in a glass of that wine. Are we having white or red? lol

This morning I go for cat scans, MRIs and xrays for more tests. Usually no big deal but the contrast makes me projectile sick for days, and last night I got a call that I am running the kids club meeting tonight. Didn't even get a chance to say no, probably wouldn't have anyway because I still try to be supermom. Pray for me that I can pull this meeting off without too much trouble. DH took his bike to work (so oldest DS can pick me up from hospital just in case) in anticipation of me not feeling well afterwards(understatement). lol.

It took DH a bit of time to understand the condition, but in talking with other professionals, and with education, he has become more supportive and protective of me. He will tell people no, or make me go lay down, or tell me it is time to stop or to go. hahaha even sometimes when I don't want to. But he is able to see me going down hill sometimes when I can't see it.
Gotta run, gonna be late to get irradiated to the point I glow in the dark.

 

[Jena]

lol....You are all so brilliant really.

I admire you all so much for the way you cope, and get on with things.

You also have a great outlook and sense of humour.

Sarah I read what you said about potassium, and this is really interesting. In 2001 which was when my symptoms became much worse. I had a Mini Stoke or a TIA. But when they were investigating the cause it appears that my potassium levels had just suddenly dropped out in my blood.

I was made to drink a potassium solution every few hours and monitored until the levels came back up, as low potassium causes the heart muscles to go into spasm. Glad you are on medication now. I was also low on B12, so maybe this is a key thing that causes a lot ofthe problems with Fibro.

Until that time my symptoms were quite mild, I had a lot of aches and pains, trouble sleeping and some muscle spasms, Ohh and the Fog, but not the severe problems, especially the Hives and the foot problems or the swollen hands and pain from lifting.

On families and friends, yes you are right, it is a lot like the issues of mental health issues, unless people can see a physical injury they assume it is not that bad, or is all in your mind. It is good to see how your partners have learned the truth and accepted it.

Jena.

 

[Jena]

Quote:
Good luck to you Ferngully.

Best wishes that you feel fine when you get out of there today.

Jena x