I am still new to understanding this. I have had symptoms as far back as I can remember but nothing to the extent of the past few years. I was finally diagnosed in August. I am not sure how to live with this still. I am on neurotin, klonopin ( control constant twitching/shake in limbs) and just a few weeks in on Savella. I use flexeril and occasionally opiates for severe pain.
The rheumatologist, pain management and neurologist tell me often that I just have to plan ahead, conserve energy and rest when needed. I either am doing it all wrong or their theory is totally wrong. I have been put on disability and no longer work which is a lifesaver.
Yesterday I thought I was cautious to rest before the family events. I did all my cooking balanced over the past week and froze. As the rheumatologist has recommended I didn’t eat any Nightshade vegetables, grains or sugar (grains are still.experimental for me, unsure if it’s gluten or.all grains). We always do." Clean Eating" ( minus grains fir me) and I was careful to prepare dishes that were normal as to prevent pain. I alternated standing and sitting. After 4 hours I was getting tired which my dh is great at noticing. We graciously left early and I got in bed sore enough.I resorted to pain med and muscle relaxer. I finally got very broken sporadic sleep from midnight to about 3 at which point pain seems to have doubled. Nothing seems to touch it. Even the blankets seem to hurt . Heating pad is in use but not helping.
I.am sorry this got so long and rambling. I am so tired of sleepless nights, fog, pain. Anyone here find a successful balance or is that a myth…
Awe never be sorry when you have a long story, we sure don't mind here. To this day I have not found the right balance. I just have my good days and many more bad days. I started using a heating blanket because I hurt all over and I'm able to just wrap my whole body up in it. Sorry I haven't been that helpful but wanted you to know you are not in this alone. Hope you have a good day. Gentle Hugs coming your way, Robin
The bad news first, insomnia, pain, fatigue, brain fog, IS this disease. There is no magic pill. Good news, if you find the right combination of meds, activity, therapy, etc you CAN feel better. but probaly not everyday. I've had this over 17 yrs and I still have to adjust meds, etc. I'll tell you what I'm taking, that's helping me for now. Everyone is different. Trazadone 50mg helps me sleep, along with 10mg of Valium, and 10 mg of flexeril. I also take most of my meds at night, if there is any chance they can make you sleepy. I take Celexa (anti-depressant)40 mg, Percocet 7.5 in the morning and I have another one available for the rest of the day or night. (I only get 60 a month) I try to save it for the worst pain. It is the ONLY thing I've found that actually helps MY pain. SOME narcotics can actually keep you awake. Like Lortab does that to me. I have Phenergan for nausea, which also makes you sleepy. I take propranolol for anxiety.It helps me sleep also. My Dr said actors take it for stage fright. It's also a Beta Blocker, which is why I take it because my heart races or palpitates when anxiety is bad.
And now I can't remember what else I take! hello brain fog!
Sounds to me me like you did quite a bit, physically. Even though you paced yourelf. Keep notes of your activity and sleep and see if there is a correlation. I try to keep notes ( when I don't forget!) to see what works best. Oh and never drink caffine past 2pm. My Dr said.
One of my favorite things is my electric throw. I try to keep my muscles warm, even when my core is hot! I bought it online at JC Penney a few yrs ago, it's machine washable.
Hang in there, it's all a balancing act. :)
Hi, please don’t apologize for anything, with fibro it is a balancing act, & you are doing it, more than you realize, the balance of activities only helps us to be able to be involved at all. It sounds like you did balance, if you had not, you may not have been able to participate at all. And prob would feel even worse. In order to be able to function at all we have to balance everything. Preparing for thanksgiving is very hard, I had to do some shopping to take some things to my daughters. So I got my son to shop, I rested all morning ( on thurs ) took shower the night before, because I knew it would be a long day, & resting prior to any event is crucial, then just being at my daughters, helping with dinner, I couldn’t help with clean up, I also knew ahead of time I would be shot on Friday , so I do a few things & rest, just about any activity causes more pain, & fatique. We are continually balancing … & no matter how hard you try , there are going to be days that all the balancing in the world won’t make the pain & fatique better, it will only make the recovery from the event maybe a bit shorter, does that make sense ??? So we participate in dinner, had I done more than I did, I would prob be shot for 2-3 day , I really tryed like you, to do things ahead of time, and just being out and helping with dinner, even though I sat down a lot … I’m still hurting more today … That fibro … So I don’t think you are missing anything, depending on how long you feel worse, kinda dictates how much you can do… I also climbed into bed last night hurting so bad !! That’s the price we pay to just participate a little
Your def not alone, and it’s so wonderful that your dh is sensitive & understanding , that’s such a blessing !
Hugs & blessings
Dear Payton's Mom,
You are very aware of your condition, and are very careful about your eating, your energy expenditure. Sometimes all of this helps, sometimes nothing helps or makes sense. It is just not always logical, it really does help if you are mindful of over-doing, but sometimes, it hits you for no reason. Sometimes feeling badly can be traced to weather or barometric pressure or something we ate, sometimes not.
For years my Dr has begged me to use opiates as a maintence drug, the progression of the Arthritis and other autoimmune diseases are getting me closer to this all of the time. I take morphine every night so that the pain does not completely rob me of sleep. It does not mean I can sleep 'normal hours', because I cannot, so I sleep when I can, and the morphine allows me to just be able to lay down! You just have to do what you can, when you can!
Sounds to me like you're doing okay! You are wise to go to a Rheumatologist, and wise to be informed, knowledge is our most powerful tool!
I'm glad you were able to have a nice day with your loved ones!
Nice to hear from you, wishing you well!
it sounds like u did what u could to try to prevent pain. i have learned that even if i dont do much if i am up and doing things all day with out a nap i am in more pain than usual. like u i am not sure of really how to balance cause some days just seem to be more busy than others.
i hope you r feeling better tomorrow just rest and do things as u feel better. just take your time.
Thank you for your honesty and help. As you said meds are so individual! I forgot I also take trileptal. I didn’t go into the confusing fact that I have a non-epileptic seizure disorder that may or may not. Be related to all this. The doctors haven’t seen it just like mine however the neurologist said “stress” can cause seizures and for my body that could be stress overload in pain, temperature, emotional, the list goes on and on. The last hospitalization there was an obvious connection between pain increase and seizures. I am resting the day away, after enjoying a short breakfast out with family. I believe a nap is again in order. Thanks again!
Thank you for the reassuring words. Much appreciated!