Hi y'all I guess I kinda should of introduced myself before I started posting but it was really kinda nice to have other people that actually understood what I was going through verses being just oh yeah i understand (not).
So a little about me, My name is Joanne. I choose the name ranjo because my husband is Randy so together we used to be a power couple and we called ourselves ranjo. This is my second marriage we are nearing our five year mark. I actually was doing really well health wise until about 3 months ago. I previously had several instances like this but no Dr would diagnosis. Three years ago I got a official this is what it is and now here the last 3 months my life has fallen apart. I don't want to say I don't have time for this because heck who does. I formerly flourished on stress. I was retail managers for high volume stores and I loved the 80+ hour work weeks. I ate up the stress and pressure and ran with it. Now the hint of stress my body shuts itself down. I am out for days. I want to say i don't have time for it because between my husband and I we have 5 kids (4 with disabilities ranging from asbergers to cerebral palsy) all teens. I can't stop or slow down.... but I can't say I don't have time anymore. Because I literally feel like if I don't take care of me noone else can. If I don't take care of me... I can't take care of my family. I am still very new in this struggle. I am just now seeing the major side of it instead of the life is great 2 down days and we are off again. I am seeing the crap 3 months of pain is going crazy make it stop side. I officially started looking for the miracle drug and stumbled on y'all. No miracle drug.... fine but at least maybe I will have the support of people whom get it.
Anyways I want to say thank you to all that have posted on my wall it is so appreciated made me feel very welcomed. It is nice to not be shunned because I am new.
It is sad that it takes so long for some of us to be diagnosed. I am glad you are here with us. Taking care of ourselves is very important. I hope you have many pain free days
Hi Joanne! Welcome aboard. We have humor,shoulders to cry on, ears to listen, advice, shared experience, and info galore. Feel free to ask, share, or just plain vent. Oh! And also here you will find 100% of us understand what you’re going through.
Welcome to the group. The body has an amazing way of bringing us to a full stop with this ilness. I’m just coming out the other side of what for me was the most severe flare I have had. I’ve been off work for 3 months this time. People on this group have been awesome with their support. For me this time I am re evaluating work. I am only one person and have been carrying two people’s workload since the other advisor retired a year ago. I will return to work but this time I will only carry my own workload and I will be saying no quite a bit to work that is not mine in my role description. I imagine this may annoy some people but my re evaluation has told me that if I want to stay well enough to continue working for now them I must make sure the workload is manageable. Anyway enoughabout my situation…jump on in with any of your questions or support anytime.
It seems that stress is a huge trigger for Fibromyalgia, and you definitely have your share. I applaud you for not only taking care of your family all of this time, but for having worked in such a stressful job and enjoying it!
As difficult as it is, we all need to learn to be selfish. We have to take care of ourselves first, otherwise we won't be able to take care of anyone else. It's so hard to keep telling people that we can't go somewhere or do something because we don't feel good, but it's crucial to our health, both physical and emotional.
We've all gone through these things, you aren't alone in that. Just getting a diagnosis can send you into a tailspin, and then trying to adapt your life around it can feel impossible. It can be done, we just have to be creative in finding alternate ways to do the things we used to be able to do so easily. Having the support of others who are dealing with Fibro can help you through the rough patches.
I'm glad you've joined us, we're a pretty awesome group! Never hesitate to ask questions, and please share with us anytime. I was happy to see your introduction, so we can get to know you!
I am so sorry you have to struggle with this. It is a nightmare that is so hard to imagine. It will get better once you figure out the things we have to do differently, please feel free to discuss whatever you need too. This site is helping me so much. I got rid of my facebook, there qas a lot of drama, and lets face it, we are the only ones that truly understand. Just take it one day at a time now. Do your research if you are ready.
Bless you for taking care of your babies. Mine keep me going.
Hi Joanne and welcome! I'm glad that you've found and joined us. I think it's imperative for people with fibro to speak with others who have it. We know that we're not alone, we didn't make it up but it is eating us up. And here is the truth about fibro: most people with it are people who thrive on stress and work their butts off, Meanwhile, fibro attacks us and gets much worse when we are working our butts off. Fibro loves stress!!! And lordie, you are under a great deal of stress!!! And Joanne? You are going to have to find a way to slow down and take care of yourself because you'll only get worse if you don't. Do you have to work? If not, may I suggest either cutting back on your hours, finding an easier job or else stop working? I know that you can't stop mothering your children but are any of them able to help you out with kidcare? If not, try to pace yourself. So many of us have to do this, and sometimes we have to go back and do it again if our symptoms get worse. I'm going to include a great article that talks about pacing and what it means to us in our daily life.
I'm lucky in that I still have enough energy to get up and maybe go to a store and look around a little bit on a good day. But many days, like the author of the spoon theory, I have to figure out what I can and cannot do. On Monday, grocery day, I need a bunch of spoons to get to the store, get into the mobility scooter and pick out food/lift it into the basket and onto the checkout counter. Them I need still more spoons to pack them in my trunk. And I need a boatload of spoons in order to unpack them and haul them up the 10 steps to my door. On Tuesday, I will feel awful and won't be able to get up and around Quite possibly all of Wednesday too. So it's a really good article and I hope it helps you to understand how life will be with this illness.
Pam, why wouldn't your neurologist give you an RX for Naletrexon LDN? I find that quite perplexing. I think it's wonderful that you and your hubby feel so much better. Living pain free is a YES desired experience for all of us with fibro. I will ask my doctor about this drug when I see my doctor again. I respect her opinion a lot.
What fibro symptoms do you continue to have? Is fatigue one of them? I would think not, since the pain causes the fatigue unless the drug is masking the pain but it's still there. I would think that's possible; that's what happened with Lyric and myself, except the fibro is getting worse and outsmarting the Lyrica.
So I'm definitely interested in your medicine. If I do get on it at some point, I'll be happy to share my experience with it, as you have. We are very fortunate to have such a helpful group of people here, as we try to share ways to improve the quality of our life. Three cheers to us for caring about helping others!
The spoons theory is one of my favorite ones. My daughter has a mitochondrial disease which basically her energy cells don't function right. They mutate and some days it could be her hearing effected another it could be her heart. I used the spoon theory to explain to her teachers in a IEP meeting what exactly was going on with her. I had never thought about putting it towards Fibro but now that I think about it I guess it is very accurate. Some days I am great and then I pay for it. Thank you for making me rethink that theory.
This is something I will look into and get more info on. I find the research side of it very interesting. I hate how some meds are allowed and others not. FDA limits so many drugs at times that they just don't look at what benefits for some of them are.
Ranjo;, I like it! My family has always been great for nicknames, so I'm in!
I am so very sorry this has hit you. I have to tell you that we all write the same story. I'm not a medical professional, but I call Fibro the 'Overdoer's Disease'! Seems it does not matter if there is injury or illness, stress is such a HUGE trigger for this and sometimes it comes on just like a 'hit'. The body just says no more, and it seems to keep us from the overdoing.
I'm glad that you are here with us. We have all chased the 'miracle cure' or the 'magic fix', but this is becoming so prevalent in our society that great research is finally being made, and more testing and knowledge is available!
Thanks for posting! Take good care of you and yours!