I am new here and posting tons of things from questions/symptoms I have to comforting people. I have to say I am very encouraged by the group here as I am learning so much more about my diseases than I ever would from my doctor. He told me I wouldn't have memory problems from Fibro, the heart jumping is not from Fibro, your breathing is not a relation to FIBRO guess I need another Doc because I have learned the answer is 'yes to all of the above" with fibromyalgia. I have had my first real flare from this, I have gone through a lot of leg issues and pain there and fibro on and off but not understanding my disease I put it off to the arthritis more, now I know what Fibro can really do when it's at it's all time worst. It lasted a little over two weeks with nonstop aching/pulling/pain/headaches/severe fatigue/breathing issues/so exhausted felt everything was shutting down, absolutely NO ENERGY,even to talk was an effort, out of breath just talking to my daughter and my sister, I could not sleep and getting 3-4 hrs a night is all, Fibro Fog (now that i know what that is was actually relieved I am not an alheizeimers patient in my 50's.) It explains SO MUCH now to me. In all of this mess there is some peace of mind now due to this site and the lovely people who are here to HELP educate you and lift your spirit, yet also tell the dirty details of this disease that is affecting your own lives too. ALthough some has been very discouraging it has been educational. For some reason I have started to calm down, after 2 weeks from hell and an ER visit, things are subsiding some. I am able to sleep lately not without moving around a lot but getting through the night without having to get up try to move so these horrible feelings calm down. My ? is for any who care to share their experiences, when the fibro flare begins to subside, can it come back at any given moment? does the cold affect it? do any of you have any 'triggers' that you know of? The only thing that has changed in the past two weeks for me is I am now taking REQUIP for restless leg syndrome and I had backed off of dairy for the time being and I have began as of last night 11/13 taking prednisone and it has significantly taken the stabbing pains in my knees down so I can walk (not without pain) but walk standing straight, for weeks I've been walking bent over with my cane. I have been on and off steroids all my life and know they are something you don't want to be on long periods of time but they really work quick with me and my severe arthritis pain I get in my knees/feet/neck, the thing I worry about the most is my heart is always jumping, it never stops, and I know steroids can cause some heart issues too, long term which I am a long term user of steroids, so any info here too would be wonderful! I welcome ANY comments or stories.
I went several years doing really well I have always been a fall and winter person till this year the cold is horrible and I have been achey. Before my little side trip to the hospital I was doing light stretching before getting out of bed and aqua therapy it seemed to be really helping. I also take requip and it helped. Flares can come and go I always feel achey and the fatigue is horrible. The important thing is to find what works best for you it can take time. I would talk to the doctor about your heart problems.
I just want to cry because there is so much to soak in, I am not new to pain I was diagnosed at 24 with 2 forms of arthritis and have never lived after this in a pain free environment so I know how to deal with pain and what is best for me to help me through it. I have bouts of the milder form of Fibro for the past year or two, can't remember last when I was diagnosed as I have unreal arthritis pain/permanantly dislocated joints in my feet, two that the joints fused together and aren't there anymore, they are a mess and cause a ton of pain radiating up my legs, hips and back and have dengerative disc disease as well, damned arthritis and all the other things that have followed. Your right though the more and more i ask and the responses I get are preparing me to "strap in for the ride". (Not cool and very sad) The fatigue is intense, so much so even talking gets me tired and out of breath. I have had numerous cat scans/ultrasounds, X-rays tests, cardiac workups, lung tests, lungs and heart look great even after the blood clots it is clear and good blood flow. ER doc told me unfortunately this is an arthritis/fibromyalgia flare and I'm sorry and knew a bit about Fibro and educated me the best he could he was comforting and his face was sad as he must know someone who suffers from this too. I have been extremely ill since march of this year and so ready to have some peace from it all. I am seeing a chiropractor soon, haven't been to him yet as our car is broken down can't fix it for a few more weeks (thank god hubby works form home and all my daughters live near by) but as soon as I can i'm going, he knows fibromyalgia pain and wants to help me he heard about me from my brother in law and will not expect $$$ he said if I don't have it I don't' have to pay him he wants to put me in a study and try things with a group of us he says he knows will make a difference, I'm willing! TY for the BIG FAT HUGS we all can use those!!!! LOL
THx and glad to know you are out of the hospital. I kept you in my prayers. ahh good to know requip is helping some, do you stay on it even when your flares are milder? or take it as it is bothering one something I've been wanting to ask my doc. The achy and fatigue are with me a lot too but with both things flaring as of late the fatigue was unbelievable, enough to where I thought my body was shutting down-really scary.DO you have anything you'dl ike to share on what works for you? I have seen him re: my heart, the scan showed nothing wrong and they are doing a holter monitor soon to see if I need to be on meds. It's been doing this ever since the saddle clot and numerous little clots were all in my lungs, April. and are also telling me my pcp and my pulmonary doctor that the lungs look great and should not be affected now. The pulmonary Doc's assistant nurse told me she said the breathing problems are from the Fibro and the pain your are obviously in will add to it.
Hi Kelly, LOL gotta love big fat hugs lol :) TY We too have a roof over our head, not a lot of food in the fridge but enough, and a family that does love me although since I have all of these problems everyone seems to tip toe around me, my girls call me and help whenever they can. THy feel helpless and don't know what to say a lot. My oldest said to me recently, "I call you and you talk and talk and talk about so many issues and then I don't want to tell you 'good news' as you are suffering so much I feel stupid to tell you something good for me" I cried….I did lol stupid me, I told her I WELCOME ANY GOOD NEWS as good news keeps me going, I learned to not complain so much there was just so much going on I wasn't familiar with that I told her every time she called lol. Your right, I'm no stranger to pain but t have been on the arthritis ride, but the fibro ride is new to me, well the flare from he%% anyway is new to me and it was horrible! I had my I.V. yesterday and it has calmed the arthritis and the fibro is minimal just some pulling in my legs are bedtime but not anything like it was the past 2 weeks. so glad it's calmer. Sending big fat hugs back!!!
I experience heart flutters often, and they take my breath away. It isn’t pain, but almost like my heart flutters rather than beats. Like a series of flutters replaces 3-4 beats. I have tachycardia (rapid heart rate) but unlike mostpeople on here, I only have Fibromyalgia. It seems almost everyone else has arthritis with their Fibro, or Lupus, or MS. My cousin has been a nurse for many years and has told me for a long time she thinks I have MS, she pays close attention to me and my health and she says I show many signs of MS. I have never mentioned this to my doctor, seriously how do you expect to be take seriously if you walk in and sit down and say “I think I have MS” I don’t see the symptoms myself, but she does. I guess where I am gong withthis reply is that we all have Fibromyalgia, we all have our own other issues and some of our symptoms could be from our other problems too.
This is interesting, yes I have the daily heart flutters, my cardiac work up was good so heart is healthy from what we can see. I have been asked if I have MS, due to the severe weakness and many issues in my legs/calves/feet most recently while getting my I.V. of Remacaid (2 days ago) My nurse who I love, asked what is this rash up and down your arm? I touched your arm and it appeared, I don't know what that is I told her, it's been happening for about 6 mths now, if i scratch any part of my arms/legs/tummy/neck there is a line of small not raised up pink bumps and scratch marks in lines….as I itch the itch it spreads as I itch it, my face burns esp around my nostrils/chin/lips, she asked Lisa do you have Lupus? I said not that I know of, today at my grandsons game I was talking with my daughter who is a nurse, she asked the same thing, she said your have the'butterfly" pink rash on your face have they mentioned lupus to you? SO here I sit…do I go to the doc and ask if it's possible I have Lupus? lol I'm in the same boat, something new to look into I guess.