Unpredictability of Fibromyalgia

Hello I am a new member, I am feeling a bit overwhelmed. I have fibro extremely bad. I seem to be couch bound every day. I was diagnosed in 2010. I had gotten black mold poisoning and from what I read the fibro stemmed from that. One day I can get up and do some things other days I just can’t. I feel very lost and right now at this moment don’t have a good quality of life. I try to stay up beat it is so hard. I have a 2 year old grand daughter and it is hard keeping up w her. My family doesn’t seem to understand, they can’t understand why I can’t do things. Signed wanting to get better.

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Hi Missy. I’m a new member also. I can relate to your post. I was just diagnosed in September 2016, but it would seem it’s been present most of my life. I only had small flare-ups (usually I thought I had the flu or a really bad cold). Within 2 to 4 days of pretty much solid sleeping I would be back to normal. Now I haven’t had a day without pain since June. Possibly getting ready to loose my job and my husband says he understands, but when things are really bad (like I don’t have the energy to get out of bed for a day), I get those comments like “Aren’t you going to do anything today?” I thought once I was diagnosed I could take a few pills and get back to a normal life. There are days I want to stop taking all my meds so I can feel normal and food would taste right again, but then I remember the really intense pain I had without the meds. Do flare-ups last for 8 months? Will there ever be a day without pain and feeling like I’m living in a fog? It seems the more I research, the more confused I become.

I hope you’re having a better day Missy. Wish you were on line so we could chat.

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Hi Lelakay and Missy,
I have had fibromyalgia for 40 years, but didn’t know it until about 8 years ago. I didn’t know why I was so tired and some days I felt like I had been “run over by a truck.” I have heard that is a common complaint from people like us. I have tried many medications to see what combination works best, and have taken many tests. Yes, there are side effects of the medications. Right now, I am doing my best to make it to work every day. I have had to give up a lot of outside activities. Rest is very important. I am so blessed to have an understanding husband. I went to a pain clinic, and spouses were encouraged to attend in order to help them understand that this kind of pain will not go away altogether. It is like a tree with roots. These roots can never be pulled out, but the tree can be trimmed and maintained. Believe me, I am the last person to be handing out advice! I also seek advice from others and welcome advice from anyone who has information that might help. The pain clinic offered many good techniques for pain control, but I still have exhaustion, even when pain is not that bad. Sleep is not deep or refreshing. If we all keep sharing ideas, hopefully we can get the best quality of life as possible, and help our loved ones gain a clue as to what our existence is like.

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Hi Blessed1,
Thank you for the reply. I was so happy to see this site pop up in my email. I still haven’t found a place online where people are on at the same time I am. I would really like to know if there is anyone in the Indianapolis area that could recommend a good doctor for fibro. I’m currently seeing a neurosurgeon. He’s not bad, but it just seems like I should have a good day once in awhile:). From everything I read online it sounds like I should be seeing a rheumatologist. I tried calling some and was told they don’t treat Fibro. My neurosurgeon says it will never go away and will more than likely get worse, since I have multiple types of arthritis also. My family Doctor says Fibro is just a sleep issue and she can cure me. It seems it may take me a few years of changing Doctors before I see some (ANY) progress. And really I just don’t have the energy to deal with it. The neurosurgeon ordered some blood work this week to test for arthritis. What is funny is that I was diagnosed over 10 years ago, but he doesn’t hear a lot of what I say and apparently doesn’t read the medical history. He says if the blood work shows I have arthritis he will send me to a rheumatologist. It helps to have some outlet to express myself, where I’m not being given well meaning advice (If you just get up and start moving you’ll feel better. You can control this, it’s just mind over matter. If you quit doing so much you wouldn’t feel bad all the time), from people who aren’t going through what I am. Advice I can definitely use, but either from a good Doctor or people who are going through this so they understand.

you should be seeing a rheumathologist or a rheumy for short.They cant do much for you but at least get fully checked out by one and given the proper medicine.ive had it since i was 15 and it went undiagnosed for 7 years. im 29 now.I hate my current rheumy as she does nothing to help.

Hi Lelakay7959, you need a doctor who believes Fibromyalgia is Real, even though there is no test to prove it is. I hope that you can find a practitioner, even if it is a general family practice physician, to help you work through different treatments and medications to see what is effective for you. I have learned that even if a medication works for me, I build up a resistance and so need to change to another medication. everyone is different - in their symptoms and the treatments that work for them. This web-site has a section with a great outline of treatments and medications for FM, including a change of lifestyle, and getting some mild exercise into your routine. Take a look and good luck finding the right doctor.

Hi Missy3, my name is Deb. I can completely relate to your situation. I too have a two year old grandson that I have to take care of and it has been the hardest thing to do with fibro. I signed up on this site months ago, but this is my first time getting on and checking the site out. I feel completely overwhelmed. My pain seems to be there all the time. From when I wake up until bedtime. The medications are seeming to not help like they should and I feel so hopeless about the situation. My main reason for being here is in hopes of finding something that can help at least a little with the pain.

Hi Lelakay,
I am sorry it’s been so long since I have replied. I stay depressed a lot of the time like today! I realize that I need other people to reach out to. I really have no one here except a friend or 2. My family doesn’t understand and my mother is quite mean to me. Unfortunately I haven’t gone thru one day that I am not in pain somewhere. I feel very isolated and down a lot of the time. I don’t work… I have tried several jobs that have not been successful. As I said I have a 2 year old granddaughter and it has been extremely hard to care for her. It breaks my heart. I could never treat someone like I have been treated. It’s really bad when ur own family treats u like a second class citizen. I feel worthless, stupid… The fibro affects my memory and cognitive skills. Please reply back. I promise to be more active. I do need it.

Hi Deb,
I was so glad to read your post. I signed up months ago as well and realized that I need to be more active. I need support from somewhere. Today I am feeling hopeless. There is not one day that I don’t hurt. My medicine doesn’t help that much, but if you go off of it u realize it does help some. I have a lot of trouble sleeping. I was up until 6 am today. I was supposed to keep my granddaughter and couldn’t and I am just really sad about that. My family is very mean to me. Especially my mom. I could never treat my kids like she treats me. I try everyday to fight thru the pain but some days I just can’t . They tell u to eat right etc… A lot of times I hurt too bad to fix anything. So that doesn’t work for me. On the days that I do feel well I try and do so much that I am in the bed for the next 2 days. Thanks for listening. Having a bad day. … Bless you. Missy

Hi Lelakay,
Just a quick reply… I have an Internest that is pretty good. I had a rheumatologist and she finally told me there was nothing else she could do and wanted to refer me to pain management. Bless you…Missy

He Blessed1,
I am like you I think I have had fibro for awhile, I got mold poisoning that almost killed me and that is how I was diagnosed. I love your tree analogy . It is awesome! Right on the money. Until they find a cure I don’t think there is anything out there that will totally rid the pain. I have had to stop so many things that I enjoyed. I don’t work I have tried to but has all failed. Maybe I just can’t find the right thing. My saying is “run over by a train” " hit by a truck" also fits. Lol. I just turned 50 and I feel like I am 80. Some days I feel like my life is over. I am divorced and I just don’t have the energy for a relationship. I hope I have better days. I am not feeling well but wanted to give u a quick reply. God Bless… Missy

Hello all. I have just been reading what everyone has posted. Missy, I just saw your post about feeling like your life is over some days. I can totally relate. I’m 48 years old and work full-time (because I have to) and am going through a divorce. Most days I feel like I’ve been hit by a truck. I also think I’ve been in a flare for at least a month now. Hard to tell after you’ve been in one for so long you know? Like you I also have had to stop many things I’ve enjoyed. This illness has robbed me of the person I used to be. I can also relate to just not even having any energy (or desire) to start a new relationship. Just the thought of starting all over getting to know someone exhausts me! Lately I’ve been down a lot as well, feeling like I’m just “existing” here. Basically my life consists of 5 days of work and then recovering over the weekend. On my good days I tend to push myself to do things, only to pay for it for the next few days. It’s almost like I can’t win. My family and coworkers don’t understand how I could feel so bad but look ok. They aren’t mean to me, but basically it’s a lack of understanding. It is truly difficult to live with this illness that robs you of your very life essence and leaves a feeling of isolation in return. Oh and I liked the tree analogy also :hugs: Well, we’ll all get through it one day at a time and it’s good to know we have support here. Thanks to all of you!

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Hi Shortstack,
As I have read the posts on this blog, I am amazed at how similar all of our descriptions of the impact that FM has had on our lives. I have gone to sleep at night wondering if I will even wake up the next day because I am so sure that my heart will give out. I have also given up outside activities. I am finding ways to help manage. Besides having a housekeeper, Jet.com and insta-cart.com allow me to have my groceries delivered to my home when I just can’t go out due to pain/fatigue. Going through a divorce must cause you a lot of stress, which is probably a trigger for flares (it is for me). There are some really good books to give to family members to help them understand that you are in pain and also what things they can do for you. I also have a hard time expressing to my doctor what has been going on since I last saw her. I started logging pain/fatigue and also wrote down all my symptoms and listed the things that I had to give up due to FM (and how many times I missed going to church and/or family birthday parties, etc.). It really helped her get a better picture of my situation, and she put me off work for 3 months to see how I would do. She continues to monitor me. At this time I am looking at power wheelchairs, not because I cannot walk, but because I cannot walk far (foot pain!). I’m afraid if I don’t have one I will miss out on going to places or events. My sister has FM too, and she says that over and above her prescribed medications, she take 1,000 mg of Tumeric every morning after breakfast and says it has really made a difference for her. Your doctor might check your calcium and vitamin D levels to see if you should take a supplement. It IS nice to know that we are not alone.:grinning: I will keep you in my prayers.

Hi! Thank you for your reply. I actually do have Turmeric but I don’t take it regularly, so maybe I should do that. I also take Vit D 50,000 units once a week. I really wish I could take Cymbalta or something in combination with the gabapentin. I do have CBD oil but, once again, it’s not something I take regularly. Heck it’s enough for me to remember to take the gabapentin 4 times a day lol! Anyway thanks again for your message. I do appreciate it! :slight_smile: