[cakeladie]

Oh Kiya how awful. I have had a lot of people telling me I should try it. It now comes in a form of a pain patch. I am told that it would he with my seizures but I am sacred. I have never tried any drugs like that

One of my lupus friends uses it and it helps her but she has had to try several different kind so she doesn't get the "stoned affect". She also uses it to cook.

I hope you feel better

Sending you hugs and positive vibes from California

[Kiya]

The dose is 'the head of a pin' and I accidentally put way more than that in my food- and on something spicy (which makes more potent). Sigh. Lesson learned.
I don't know that it's helped my pain all that much to continue it. Sometimes helps me sleep. But I was so scared - blacking out every few minutes. I never want to feel that way again!!
Hugs

[January]

My eye Dr. gave me some samples of Systane Gel Drops. You can buy them over the counter. They really feel good in my dry eyes. I thought you guys might would like to try them, too.

[cakeladie]

Hi guys not sure I told you but today is our wedding anniversary. We have been married 17 years but dated for 23 years. Anyway hubby's coworker has a condo in south Lake Tahoe. It's been years since we been so we said why not. It sleeps 10 people. But when we asked for pictures we finely got I picture of the kitchen. They rent this out all the time so you would think they had pictures. So I was getting kinda upset with hubby for not asking the right questions. Then he asked my grandmother and uncle to go with us. Ok no problem. My son wanted to stay home.

We get there and they would not give us the key they said wait a could of minute it's like a 4-5 hour drive my muscles where tense I just wanted out of the truck. We get there and guess what it's a town house with a strange set up.

There is 2 bedrooms on the bottom level with the only full bathroom. You had to climb steep stairs to get to the kitchen and the living room. On that level there is a half bath and a tiny tiny room with bunk beds and you guessed it another set of steep stairs. Those stairs lead to a loft worth 2 beds. We put my uncle there.

But here is the really sucky part. This whole place is not handicap accessible.

I was shocked. I could not get my power chair in the place and I did not bring my walker nor my arm crutch. I was pissed.

Oh heck I gotta go and I will post the rest in a minute

I had everything typed out but then it crashed

So the short version. Lots of stairs the bedrooms were on the grand floor and the kitchen and living room on the second floor. Hubby decided to turn on our bedroom light at 5 am this is after he woke me up at 11 am because he thought my uncle left the TV on so I had to climb the stairs again. I must have walked and climbed stairs to the tune of over 5 miles. My knee swelled up along with my feet.

Hubby wanted to leave early because he promised to help a friend but he did not tell anyone. So at 6 am I was I. The shower and by 6:45 I had breakfast going and coffee. Then I did dishes.

I came home to do 4 plus loads of laundry. Oh around 7 am my daughter called her boyfriend kicked her out again and made her sign something that said if she did not get her clothes out of his place he would burn them at midnight wtf. Really she woke up my son and my brother in law. She ended up going to my brother in laws place for a little while. She was crying which upset all of us plus my son and brother in law. And guess what she went back to him.

I had a lot more typed out but oh well you guys understand. It's a good thing I see my rhemy on Tuesday sorry for venting like this

I hope everyone is doing ok.

Hugs everyone

[January]

Cake I'm so sorry you had such a rough time and you just vent away! We are all here for each other.

Sat. I went shopping with a friend. We usually do each of our errands and it's fun. I had no idea she wanted to go to the mall. We ended up walking three miles that day. I can't walk three miles. I had to keep finding chairs in the mall to sit down and rest. I remember when I used to fly up and down the mall. I am so sore I can barely move.

[cakeladie]

Me to. I can remember being on the go from the minute I left the house till the time I went to bed. My knee is about 3 times the normal size and my ankles are also so swollen it's not funny plus it's in the 90's here and we have no A/C. I just want to sleep but I had to go out and do a little grocery shopping.

Tomorrow I have to see the rhemy and then go to the pharmacy then I can go home. I just hope she is not running late.

[January]

I went to the Dr. today. In order to get my klonopin, I have to give up my pain medicine. I can't cold turkey klonopin, so I'm giving up the pain medicine. I don't know what I'm going to do or how I'm going to handle this, but they gave me no choice. Oh, and I have pink eye so I'm sequestered for 7 days because I'm contagious.

[cakeladie]

That doctor is wrong you can take certain pain meds with klonopin

[January]

Oh, I agree she's wrong. It's a policy they came up with last week and implemented this week. I'm stuck. I have no where else to go for my klonopin and as it is, I am working my way down from it. I have no choice and right now I feel like hiding under my blanket and not coming out any time soon.

[cakeladie]

I saw my rhemy on Tuesday she gave me one of my pain meds but not the other. She said the pharmacy gave her trouble on a couple of other patients with that pain med and another med so she just gave me the one which is ok but the other pain med I took at night or when the pain was really bad. I hope I am making sense

[January]

Oh no! Cake, I'm so sorry. I know how hard it is not to have your medicine when you need it. I am so sorry.

[Kiya]

Unreal what they are putting people through. They are taking away peoples only mechanism to cope, and not replacing it with anything and that sucks! They're taking away all the pain meds and all the benzo's. I am in the latter boat. It's criminal what they are doing! My heart goes out to both of you!

[lizardlady]

Hi all. I haven't been on-line, much less at PC for several days. Popped in last night for the first time in days. Read a few posts and thought "I can't deal with these people!" and signed off.

Popped back in today with the same reaction, but wanted to check on folks here. Sounds like all of us are having a sucky time right now.

I might not be around much for awhile. It's a matter of self care, not that something is wrong. I spend all day caring for people at work. I don't have anything left for PC members. I'll at least check on y'all though.

[cakeladie]

Liz take care of yourself

[January]

Liz, do take care of yourself. Hugs, my friend.

I don't know what I'm going to do or how to cope with this. I have so many painful things happening to my body, but I also have GAD and other anxiety problems, so I can't go without the klonopin. Also, they were going to make me go cold turkey without my klonopin if I didn't give up the pain med!
You can't cold turkey off of klonopin! You'll have seizures!

I feel very ostracized. I don't know what to do. Of course the pink eye isn't helping any. I can't go around anyone, so I'm pretty lonely. The drops make me very dizzy and nauseous. Maybe I'm just not as tough as I think I am.

[lizardlady]

The IBS part of fibro is acting up today. To use a saying a friend of mine has "my backside has started to duck when it sees the TP coming." Sorry if that was TMI. It ain't funny, but if I don't laugh I'll cry.

[cakeladie]

Oh Liz I am sorry. If it's not one thing it's another. For me if it's not my fibro acting up it's my lupus to my RA. Today it's 95 and tomorrow it's supposed to be hotter and we do not have have AC

[cakeladie]

They make it sound like we are drug addicts when we are not sure there are people out there that seek these drugs to get high. But there are also real people out there that need them. It frustrates me to no end. If only they could walk a day in out shoes they would see.

Sometimes I feel people come on PC and my lupus forum asking questions and symptoms so they can go back to their doctors and get drugs that they really don't need. I have started to back away from responding to posts because of this and that is sad

[Kiya]

(((((Cake, Jan, Liz)))))
All our reactions are understandable.
I am just through an IBS episode, so now am eating food like it's going out of style. In fact, some of the organic baby food pouches I use when my stomach won't work ARE going out of stock permanently I stocked up, spending more than I would have.
Because I've been eating food, my bones and skin ache. The body pain gets bad. I know these things come in cycles and I just have to ride them out.
Strength everyone!!
Hugs,
Kiya

[~Christina]

Hiya everyone !

I can't respond to everyone , sorry I'm struggling more than even I can acknowledge.

The reason I decided to post is because I hate Big Pharma and I truly believe that all this crap of taking people off pain meds and benzo is pure population control.

If doctors are pressured to stop prescribing and threatened to be fined then people are going to die some sooner than later but it will save insurance companies lots of money .

Where I live the only way to get a benzo is from a Pdoc. Period ! No exceptions . Pain meds ? Pain clinic and by the time they get around to actually offering any help the pain is so bad that it will takes weeks to months to get back to having manageable pain levels .

Maybe I sound crazy and I'm rambling conspiracy theory's but I'm in pain which has wacked my bipolar sideways and I'm cranky and disgusted with health care.

Gentle hugs to all

[Gus1234U]

[Kiya]

Bad pain and fatigue day… I am down to one more naproxen and I don't know if I can get another refill. I thought I'd had them a while, but it's only been since June so I made 20 of them last until now. I'll have to call the doc and see.

[Kiya]

(((((Christina)))))

[January]

Well, they've lost my urine test. I am trying to hurry and wean myself off the klonopin while I still have a little bit of it.

I have absolutely no energy to do anything. It's raining and storming and I like that kind of weather. I just don't feel like moving out of my chair and I have so very much to do. Gads!

[LucyG]

I was diagnosed with fibro 11.5 years ago, but I think it's more of variant of fibro/CFS that runs in my father's family as my twin sister developed it at the same time I did even though we lived 800 miles apart. That was 34 years ago.

After suffering with every crazy symptom imaginable to the point I was almost bedridden, I've come to believe that one of the core issues with fibro and CFS is our body's inability either to hold on to or utilize minerals, particularly magnesium as most of our symptoms are those of magnesium deficiencies. My naturopath concluded my body doesn't hold on to magnesium after he'd given me vitamin injections for 9 months. He figured six injections would turn me into a new woman. It made a huge difference, but wasn't lasting.

I now make sure I take high doses of magnesium since my body doesn't hold on to it, and am doing remarkably well. I have bipolar 2 and went off meds which also made a huge difference as the side-effects were what made me sick enough to be bedridden for a couple of years.

Here's some info on magnesium. Notice how many symptoms of fibro are also symptoms of low magnesium levels. Keep in mind too that your blood serum magnesium level will always be good or you'll drop dead of a heart attack. The body pulls magnesium from the cells and puts it in the blood to keep your alive. I think of it like taking money out of savings or investments to pay the bills thus depleting your reserves. If you're going to have your magnesium levels checked, ask for a cellular magnesium level test rather than blood serum as that's the real test of your magnesium levels. Another thing to be aware of is that most meds including ADs block the body's ability to use magnesium which is why I believe we end up with new symptoms appearing the longer we're on meds--or at least I did.

If you decide to try magnesium, you need to be sure and go with a type that is going to be easily absorbed such as magnesium chloride, citrate or malate. You need to take calcium, vitamin D3 and K along with the magnesium as they all work together. Liquid supplements are much easier absorbed than caplets so look for that whenever possible. And DON'T take magnesium oxide as it's so poorly absorbed all it's going to do is give you raging diarrhea.

When I first starting taking magnesium malate is when I first started feeling less sick.

https://www.amazon.com/NCI-Advanced-...ithium+orotate

Symptoms of Low Magnesium | Ancient Minerals

The other thing that radically changed my life is taking D-ribose for the fatigue. I take around 20 grams a day [you can take up to 60 grams], and have gone from being so dead it's all I can do to go to the store to being able to function reasonably well most days. It's not perfect, but it's a thousand times better than it was before I started taking the D-ribose. I buy it in bulk on Amazon.com so it costs me not quite a $1 a day.

One last thing. I have subclinical hypothyroidism but my levels are within the normal range even though I have symptoms so I started taking iodine. I switched to a very high quality nascent [ionic] iodine in glycerin and the thinning in my hair is starting to improve. My hair was very white in the front, but about 2 weeks ago I started noticing that it's darkening up! It's now a soft gray, and I think there's even some brown in it. It's absolutely amazing! My eyebrows that had receded years and years ago are also growing back! I do take quite a bit, but it's really helped my energy and my mood is very stable which is great considering that the days are getting shorter and I'm usually depressed by now as I live in the Pacific Northwest where the days are short and the
sky is gray. Here's a video on iodine by the Dr. whose product I use.