Has anyone here been able to manage their fibro symptoms long-term? I'm scared and need some encouragement. Advice is welcome too, and statistics or other data that might help me put things in proportion :-)
Long story / "life story version" of why I'm asking:
I'm just getting started on the life-long fibro journey, only diagnosed last week. I'm scared of becoming disabled because I am the sole breadwinner for myself, my husband, and our four children. I earn good money right now, but we've been over-spending because I've been too tired to manage the budget, be frugal, etc. (this inappropriate spending is recovering with the rest of my symptoms).
I am trying to do "everything right" - exercise but only to the point of being tired and not overdoing it, eat low-carb / high vitamin, taking my meds, getting the best sleep I can, and even rented an apartment near work where I can crash if I'm flaring and need to spend some more time on my health / sleeping / etc, relaxing when I can. I started this all before getting the official diagnosis, and it seems to be helping - I haven't had severe pain in months, and have been able to finish work every day until today, when a flare mostly affecting my brain lowered my emotional control so badly I was having trouble not crying at work (my recall and memory have been trashed for the last couple of weeks as well).
This, and the effects of fibro / exhaustion on my relationships with some of my family are really stressing me out right now. Quincy started a thread on a similar family experience, and I'm looking forward to seeing the advice she gets. I figured I'd start another thread to help me cope with my fears of not being able to support my family any more here. I know I need to get the stress under control if I want to avoid flaring again, and I generally fight stress best with information :-)
I share your pain and concerns. I too am the bread winner in the family and am scared that FM will take over my ability to provide. My symptoms came on hard and heavy at the beginning of this year. Six months earlier I married a great man and we built our dream home, which was over the top and expensive. If anything happens to my income the house will be gone and we will have to adjust our lifestyle.
Coping with the changes in my body and dealing with learning to stop when I have been programmed with a permanent “on” switch is very hard. It sends a persons stress levels to new heights. But stress is our enemy. It causes flares and makes it harder and harder to recover. I have been told over and over that I should incorporate meditation and Tai Chi into my daily life. Hard skills to learn when your brain never shuts off.
For the past two weeks I have been dealing with chronic migraines and get them daily so I know my stress level is high. That and my “always perfect” blood pressure has been high indicating more pain than usual. I am very thankful that the man I married is extremely understanding and has stepped up to the plate without asking on physical things like household chores.
As for family, I find that with some of them I just have to avoid the subject of my health. I know they are concerned about me but their comments can sometimes be stressful and overwhelming as they have no idea what we FM sufferers are going through. “Have you tried…”. Of course we have. We have read everything we can get our hands on and tried every supplement on the market. Frustration leads to stress which leads to flares and consumes our minds with thoughts and energy better spent elsewhere.
Hang in there. I wish you the best of luck. I take life day by day now. I haven’t had FM long enough to be able to “manage” it but I learn more and more about how my body reacts to things every day.
Thank you so much for your reply, Kas! It means so much to know I'm not the only one feeling this way.
I actually feel a bit guilty asking for support when it could be so much worse, LOL! I mean, I still am able to hold my job, and the pain symptoms have been improving - some of the other folks here would probably love to be in my shoes. But I also know I don't have time or energy for that attitude. Those same folks aren't going to want me to miss out on the support I need or think "she's not badly enough off to post here" - that's all just my own anxiety, and the fact that I'm flaring is probably leaving me very vulnerable to it.
"I learn more and more about how my body reacts to things every day." I hear that! I feel like I'm re-learning everything I ever knew about managing my health.
I also get "learning to stop when I have been programmed with a permanent "on" switch is very hard. It sends a persons stress levels to new heights." I've been trying to work out how to channel that "go" into things that don't add to my stress. I love to sing, and find singing very meditative but also something I can progress in and challenge myself with. I'm picking up a new hobby of recording my voice, and then sing harmonies against the recordings to make neat a capella tracks. I needed to drop crochet - too arm focused, my arms are by far the most affected area (other than my brain) - but for some reason, 40 minutes of gardening a week and a couple hours of housework are okay, but computer games are too much for me. I walked a mile on a treadmill at a fast clip today, and my *arms* were exhausted! My legs were just a bit tired.
All the re-learning is hard; I feel like I have to rebuild over half of my identity.
My current flare is keeping me awake. Even after sleeping pills and an anti-depressant with a side-effect of drowsiness. Work will be a drag tomorrow. Hopefully it won't be painful.
Ethel, Everyone on this site can understand what you are going through. Each of us are in different "stages" of our fibro. journey but we all are here to support each other. You are in the beginning stage and are learning your limitations. Never feel that you should not post because some of us are not in your stage. Fibro. can be managed with the right combination of meds. You should tell your Dr. about these symptoms. Make sure you have a journal and write these things down so you do not forget to talk to your Dr. about them. The solution could be as easy as adjusting the meds. . I also know that in the beginning the meds. had some side effects that made some things worse. It took some time but they settled down. Now with that said, remember that no 2 fibro. folks are alike, so what happens with me may not happen with you. Always talk to your Dr. about things like this as he can make some adjustments.
You should never feel that your posts are not important because they are. I myself came here looking for information and support. Fibro. is not just about pain...it is a web of things. I wanted to understand what this Fibro. was and what to do about it and finding this site was a Godsend... it is my belief that the people who can give me the best advise are the people who have gone through it. So many people suffer more that I do and yet they reach out and support me. They do this because they KNOW...they have been where I am, where you are. They know.
Please make an appointment with your Dr. and tell him about what is happening. Fibro. can be managed!!! Keep a positive attitude and avoid stress. Keep eating healthy and doing low impact exercises, Yoga and meditation I hear are good for relieving stress. The constant crying is something you need to tell your Dr. maybe the meds are not the right ones for you. You know your body best and you have to stay on top of it, you have to be persistent and consistent with your health care. Most of all remember that many people have Fibro. and still work.
We are here for you through the good days and the bad days. We are all on this journey together no matter what stage we are in . No matter who hurts more... no matter what you are important to all of us and we are all here to cheer you on... we will cry with you when things get tough and we will help you through it as best we can with our words our thoughts and for me my prayers...
Insomnia is apparently part of the FM. As you can tell from the time stamp of when I posted, I am usually up at 2am. (This morning it was 1:45am being woken up with a severe migraine). While I have had bouts of insomnia throughout my life, but since getting this illness it has become a permanent staple. I have tried Ambien, melatonin, and all sorts of OTC supplements with no luck. However my rheumatologist just gave me Flexeril (muscle relaxant) and after 20MG at bedtime, I have finally started to get some much needed sleep. Without proper sleep, insomnia compounds our flares and pain. So talk to your doctor about how to get the sleep you need.
Belinda is right, in that we are all at different stages of our FM and there are no two people alike. This website has taught me that first and foremost. So it is important to keep a “medical journal” so that you can track your condition and symptoms for better discussions with your doctor. If there is ever anything I can do to help, do not hesitate to reach out. We can talk, on or offline, anytime you like. You can “vent away”!
PS - while you are rebuilding “half your identity”…Never let FM define you! You are still the same person as you were when you were healthy.
It sounds like you are doing great and planning ahead. Check and see if your company has short and long term disability that will help if you are out at times and your sick leave policy.
Stress if a big factor try and find something like meditation to help you.
I worked for many years before I had to come out due to lupus.
Thanks for sharing. .I to am working and struggling. .trying to find right combination of drugs as well. I leaned I’m not driving the bus anymore I’m a passenger. I am a control freak and do it all kinda girl. Not anymore! Do u ask your husband for help or family? Tgt may be your next step, you sound like your on top of things. …asking doesn’t make you weak. Hoe this helps.
Thank you so much, Belinda :-) I haven't been journaling, mainly because my arms have it the worst and any arm-based stuff like writing and typing on a computer strains me and causes flares. I'm going to keep this short because today's a bit rough (I overdid it), but wanted to let you know how much your kind and supportive words mean to me.
Yeah, I'll need to talk to my doctor about adjusting meds now that we have a diagnosis. Thanks for the support / reminder to do that.
Stopping before overdoing things is hard... I feel so guilty telling my husband he needs to do everything once I hit my limits, but I'm not very good at "metering" my energy out slowly throughout the day yet. It's hard to adjust to having a fraction of the ability to act on my willpower that I used to possess - used to be I could just roll up my sleeves and push through anything!
My husband doesn't just help, he does almost everything (he is a stay-at-home dad). It's hard to help him so much less than I used to, but I'm learning. He also supports me emotionally and mentally. His parents are also helpful, especially my MIL.
My family? Heh, no. My foster mom / aunt would be a great resource, since her sister has fibromyalgia. Unfortunately, she's married to a man who - while well-meaning - is pushing me to willpower through things and get our family into a better state after things slipped badly during my last bad flare (it was my second flare ever, and I was still working out what to do and hadn't even gotten a diagnosis yet - so laundry wasn't getting done while my husband cared for me in the evenings so I could make it through work, and our kids were showing the strain of my illness). I don't think he really believes I'm sick. He's a good man, generally, and was a great foster-father. His focus on strength of character and doing what you set out to do is normally a wonderful strength that was inspiring to me in my teen years. But right now, those traits are leading him to get very, very confused, and interacting with either of them is highly stressful because I don't know how it will "come back" on me from him.
And, as you might have guessed from the fact that I have foster-parents, the rest of my family is a mess :-) Or dealing with their own consequences from growing up in a family that is a mess and raising children without much support.
Have I mentioned how grateful I am for my in-laws? I am super grateful for my in-laws. And my husband. And my children, who really help me relax.
Well I am happy that you are able to do as much as you can and hold down what sounds like a demanding job. You came to the rite place because no matter where you are on your fibro journey you have allot of support here :). I believe the top thing you will have to do is learn to take one day at a time even though you may feel you can't because if you don't the stress is going to keep you in a continual flair and I believe that in the long run keep you will be going slower than you would if you keep the pace you are going.
Second everyone that has fibro reacts differently to all the medications that are available today and not everyone get very bad and some recover to a point..so there is allot to be hopefull about.
Thirdly you are going to have to face the fact that not everyone will understand or want to understand..you must understand that its a hard thing for most people to understand even if they want to.
One thing is for sure some things will change some will be for the better and you will discover those over time. :)
Well please update us and I pray thing will get smoother as you learn to cope. Soft HUUUGGGSSS Wings
I feel for you. I was diagnosed a little over a week ago. I am also scared, worried, and in pain. I have a 18 month old son and one on the way. I really am hopeful that there is some treatment/medicine that can help us be decently functioning members of our family's. I hope you find a way to manage soon.
I was diagnosed in 1995 with Fibro and already knew all the symptoms. But what I learned over the next few years was that even though I was familiar with all the symptoms I was clueless about managing it. My first reaction was vitamins and exercise, but guess what I had tried that in 1991. I was reluctant to take medicine for it but then my doctor explained why I needed it and that was the beginning of my research. She told me that my serotonin levels were not normal and the medicine helped. She gave me amitriptyline.( I had subscribed to a fibromaylgia magazine and read every article on the research that was being done. I was familiar with just about every malfunction in the brain and body). The first week I was on the medicine was amazing because I could wake up more easily. I felt somewhat more rested. Then I continued on the path I had been on- diving into my gardening,crocheting, painting. I did them all with a passion and then after two weeks I would crash and burn. I would recover and go dancing with my sister then rake the yard the next day. Be exhausted , in bed, in pain, in agony. I would sleep, take motrin and the exhaustion never lifted. I was working 7 days a week. However my cognitive/memory abilities were being affected and my colleagues were commenting on it. Prior to being a preschool teacher I had been in sales. I noticed one thing -I could do long hours and do great. I did them only three days a week. The other days were short hours. I could not turn off my 'on' switch and I realized it's not a bad thing. I got bonuses and promotions because of my sales. I decided that instead of the full 7 day week thing. I needed to get a job that would fit my energy levels. This was the way I was going to harness my energy and make the 'on' switch work. I tried being a residential teacher but even though the hours were good the unpaid work outside of hours was too demanding. Then I thought maybe a nanny where I can do a four 12 hour days and 3 days of rest. I was able to find a nanny posistion with those hours. For the first time in my life I could be a normal person for a 4 days a week and sleep for three days. They gave me the option to work on day 5 if I could handle it. I never felt comfortable sharing much about my fibro after some negative experiences at my sales job when I had a few flares. So these parents I nannied for only knew that I had a sleep disorder. That job lasted 6 years and although I remember weekend night or a weeknight full of exhaustion all of my days were pain free. I was able to work over 40 hours in the end . Well, a lot has changed since then and I beleive no matter what level of pain or fatigue you have you still suffer because you cannot live like other healthy energetic people. That is a lonely experience and that is why we need support. My condition deteriorated after I had my son. I developed bipolar depression and my memory has never been the same since. I am currently on full SSDI.
Thank you Ethel for sharing. I was diagnosed 3 months ago and it is a relief that there are other people going through the same things I am. I completely agree with what was said about the “on seitch” in another post. Today, after taking enough pain meds, my switch got turned on and I was able to get some chores done that only I can do. I had to stop once my brain stopped working but it was a good feeling. Despite that, its still hard to hold yourself back. Just one day at a time. I also felt the same about posting. There are some people here that are worse off than us new fibro patients, or have had it longer than us, but that does not mean that they know it all. Luckily we are all here to support each other the best we can and I also am grateful for this group.
I have the same fears as many that have posted. I am glad now that I havent had kids, but my goal was that by 29 to have had 2. Also I have been on disability for 2 months and it is scary not knowing if or when I will be able to work. I’d like to thank dozer for responding about her job situation because it takes time and practice to get back to work since everyone’s job and symptoms are unique.
