I'm new to this forum. I'm a kiwi (NZer) living in Australia.

[OzKiwi.2]

Hi all, I was diagnosed with fibro a couple of years ago. But after describing my symptoms to my Rheumy we decided that I've probably had this for about 20 years. I've always had pain in my shoulders and lower back. The 'don't touch it' pain that makes you want to cry just getting dressed.
I started off on a course of steroids Prednisolone and coming back down the dose, I was great at 15mg daily. We all know you can't stay on that, so I was given Cymbalta. May as well have given them to the dog. Now take 75mg Lyrica and I'm considering throwing them out as well. Also on Venlafaxine anti depressant and because of those, I now have high blood pressure. Okay, I can handle this.
My problem is cold. It usually starts around 3am and I wake up cold. I'm not talking a bit cold, I mean teeth chattering, prickly sore to touch skin and feeling like I need to throw up or faint. I get out of bed and put on socks, boil the jug and take two wrapped hot water bottles and every blanket in the house and go back to bed. I usually go into a deep sleep, really deep, burn with the hot water bottle deep sleep. I wake up about 4-5 hours later when my body has warmed up. I'm then back to sleep without all the extra blankets, for another hour or two. I call this my hot and cold, or cold and hot.
I then get out of bed, this is usually mid afternoon, and have a fatigue hangover for a few hours and by evening, I'm just tired an have an early night.
Please, does anyone else have anything like this? It's not hormonal, and a full genetic test revealed nothing. It happens as often as 1 or 2 a month, or sometimes, I have a month to 5 weeks without an event.
It has been happening for 12 years. I'm 54 and post menopause. Thanks OzKiwi

 

[Hedonologist]

Hi there OzKiwi. I'm glad you've found this forum. There are many people here in a very similar situation to yourself so you'll have no shortage of friends here

 

[Justmesuzi]

Hello OzKiwi2, I'm new on here as well and want to tell you that you are SO not alone in the freezing zone. Just Friday I went to my Rheumatologist and part of what I told him is that I get the chills so badly that I feel my teeth are going to break from chattering so badly and as I see him quarterly and have for the past eight or so years I'm sure I have told him before. I run a HOT bath of Dr. Teals Epsom salts with Lavender and add foaming Chamomile liquid bubble bath to it and sit in it until the chills leave my body. I find this is the quickest way to break the chills which for me come mostly after eating and at bedtime. I'm 49 and have had nearly every kind of blood work done known to mankind it feels like and so far hormones have not been thought to be the culprit but I'd give most anything to know WHAT is causing it. I haven't known anyone else to have this issue but then again, this is the first support group that I've ever been in and haven't knowingly met many with Fibromyalgia, just joined this past week myself and have met just one other person who answered on the thread I placed under moaning and complaining. The bath salts pull the toxins out of your body and work like magic, they allow me to sleep the slumber of a child. I've been on Lyrica for six or seven years and it took a couple months to do its magic and it did and does but I have one HORROR story with it; After being on it for a year 50mg x 4 daily, the ball was dropped between my doctors office and the pharmacy and I went two weeks without it and during that time I was in the ER THREE TIMES with seizures! I had NEVER had a seizure in my life and now I have them several in a day or none for months, life changer to be sure! They can't figure out what is causing them so they can't make them stop. I am now taking 75mg x 4 daily along with 10/325 hydrocodone (knocks the rough edges off and I take about 3 or 4 a day), flexeril 10mg (maybe take 6 in a month as they give me a day long hang-over) and as of friday tizanidine hcl 4mg. As to the FREEZING, it comes and goes in frequency and has been going on for the past several years but you are the FIRST person I have talked to that also has it and has had blood work but yet it doesn't tell WHY it is happening. We live in a very warm and tropical climate, our winters may have some days go to the 30's but it is rare and they don't last long. I do find links with the barometric pressure just as I do with joint pain and arthritis. Hoping to hear from you and how you are doing.

 

[OzKiwi.2]

So glad that you've joined the forum and read my post. The dose of Lyrica is 75mg twice a day. Sometimes I forget the evening one . . . I was also taking Plaquenil, but that didn't seem to do anything, so with the Rheumatologists ok, I stopped taking it. The cold hot thing has been going on since May 2002, just after we moved to Australia. Originally the Dr had no idea, so she just arranged blood tests. At that stage my hormones were going crazy. It was the start of peri-menopause. The hormones relating to lactation were high, but obviously I was not breastfeeding. My daughter, was then 18. I am anaemic and can't take iron in any form, so about every 2 years or so I have an iron transfusion. The last one has lasted really well, and my iron levels are still good. My white blood count goes sky high every so often, like I am fighting infection, but I have no symptoms of infection. When I am doing the cold 'thing' I'm too weak to have a bath. Sometimes my partner has to help me back to bed, and then he brings me blankets, hotties etc. I have tried getting out of bed while still cold, but I'm 'neither use nor ornament'. I need to wait until I've done the warm thing and then get up. Have the fatigue hangover and slowly improve. I've only once had it 2 consecutive days. No amount of pills seem to help. Tried all, disprin, panadol, panadeine, nurofen nurofen plus, ibuprophen. The hot bath sounds like torture. Even where the sheets/blankets touch my skin, it hurts. I feel like the Princess and the Pea, because even a small wrinkle in the sheets hurt. Your symptoms sound so familiar though. Please tell me more. Thanks OzKiwi

 

[HappyToBeAlive]

Hello hedonologist! Just wanted to Welcome you to the forum! Can't say that I have your horrible"freezing" problem. I do get cold hands,but nothing so drastic as you are describing. It sounds like a really bad reaction to med. or something! Hope your Dr. or somebody can figure that out. A lot of members are on "the fab 3"(as I call it),Lyrica,Savella,or,Gabapentin. I am on my first Fibro med.,it is called Trazadone. Have only been on it for a few nights. Takes 2-3 weeks for it to get in my system,so don't know how it will work on my pain yet. I would read the old threads,a lot of members are on Lyrica. Hang in there! Soft hugs

 

[niiro17]

Hello there OzKiwi. Welcome to the forum. I hope you enjoy your stay here. Have a nice day.