Jumpingjimeny, I literally feel your pain. 4 PM is crash time for me too. I used to be active and energetic. Now all I do is work. It's the only thing I can sustain enough energy to do. No housework, no social life. Quitting my job is NOT an option. I work 7 hours a day, the total commute is about 1 hour. Five days a week that is my routine and week-ends I am exhausted. Those "weird" sensations are felt by many people with fibro.
Some days I am so exhausted, I have to take a day off to stay in bed. You are not alone. I just wish we had some new treatment options. I have been like this for 20 years now. Some days are better than others but I cannot say I have ever had a period of remission. The flares are when symptoms are at their worst.View Thread
Greeniehope, we are glad to help you on this journey for answers. B12 can be helpful especially when injected weekly. I do not experience dizziness often but it could be a symptom of fibro. Before removing your fillings, be tested for mercury poisoning. Insurance will not cover replacing the fillings and it can be very costly. Did a doctor perform the trigger point exam used to identify fibromyalgia? There are 18 points that must be palpated. I forget the exact formula regarding quadrants but think if 11 cause severe discomfort, it is likely due to fibromyalgia. When I did exercise I would get a delayed reaction. The pain would develop 24-48 hours after exercising. Now I barely take a leisurely stroll. Yes, I know exercise is good for managing fibromyalgia but I cannot get motivated. Good luck on your quest for answers. Keep everyone here posted.View Thread
I feel the same way. It is overwhelming and sudden. Worst of all it can happen without warning. Recently I was so tired and weak that I kept telling my body to "get up and close the door" but I couldn't even do that. Woke up 20 minutes later feeling confused and still tired. I wish there was something we could do to improve the quality of our lives.
I started this thread 3 years ago. I understand how you feel. That is exactly the way I feel before I am overcome by fatigue that cannot be fought. I have to sleep-even if for a short time; 15-20 mins. It is frustrating. After many scary episodes, I started taking 200 mg provigil. Now I think I may have a tolerance for the medication. I experience the sudden need to sleep a few times a week. The muscle weakness you describe could be indicative of narcolepsy. I get the same sensations. Even if sleep is not possible because of pain, going to bed for awhile to rest seems to help. There is no correlation between how many hours of uninterrupted sleep I get and the day that the fatigue hits me hard. I still need to work. I am too young to retire and probably would not qualify for disability under the present guidelines.
My insurance is making it difficult to get the medications I need and see the doctors that have been involved with my care for almost 20 years. It is very discouraging.
I thought that health care was better in the UK and other countries. Here in the US, pharmaceutical companies and health insurance limit the help we can get with fibro/ chronic fatigue and other health conditions. Be persistent and hopefully you will get some assistance. Maybe a sleep study would convince doctors of how serious your sleep "attacks" are and the impact they have on the quality of your life.View Thread
I too know the shutdown sequence my body starts when fatigue just takes over. There is no choice or working through the situation. I feel like I have hit a wall at high speed and it often happens at a particular time during the day. Mine also hits towards the end of the workday; it's like my body has reached it's absolute limit and cannot be pushed any further. Only someone that has experienced it can understand. Unfortunately, I have no options. I need to continue to work and it sounds as if you are in the same situation. Some days I feel like I won't make it unless I give in and sleep at that exact moment in time. If I catch a cold or other virus, the fatigue is amplified one Hundred times. You are not alone but I wish there were more options for people like us. I am getting up to start my day. I am already exhausted and wish I could go back to bed.
Best of luck. I have no answers but if you find any please share. I have been barely living with this condition for 20 years now.View Thread
I do not understand why this discussion was started 2 years ago, it continues and there has been no new input from Dr. P. or the medical community. How is this supposed to be helpful? Two years ago I wrote a response that is still here and could be the same thing I would write most mornings. Everyone comes here hoping for information and help not just to complain. Two years have gone by and here I am reading this, completely exhausted from another sleepless night about to get ready to go to work. I will be fighting the urge/ need to sleep all day. By the grace of God, I will be able to safely commute back and forth to my job requiring complete alertness to travel 3 different major highways with heavy traffic. What is the purpose if 2 years have passed and I just read the sufferings of so many like myself when what we need is medical advice. My Dr. has no new ideas so I am feeling very frustrated right now. Should I mention the endless pain?View Thread
Hi. Was wondering if anyone was taking Provigil to help with daytime sleepiness and the dosage. I have been taking 200 mg daily for about 3 years. I think I have developed a tolerance and this dosage is no longer effective. I take the 200 mg in the AM. Different sources have varying amounts as the recommended dosage. I have seen 200 mg. as a maximum and other sources say up to 400 mg can be taken daily. I would appreciate if people would share the dose and how it is divided during the day. My Dr is very conservative and I expect that she will refuse to increase my dosage to 300 mg daily but I am going to ask at my next appointment. The increased dose is essential for my safety during the day. I would be willing to take the increased amount on work days only.
Thank you for any input/advice on this matter.View Thread
Jdhnay25, I literally feel your pain. The summer I was 29/30 (August birthday) was when I was finally diagnosed. I am now 49. At the time I was raising 3 small children. Husband was not supportive & still isn't. I think I tried every medication ever associated with fibro , CFS and sleeping disorders. Physical touch, no matter how light can cause excruciating pain. I hope you can make your DH understand. Couples therapy can help but you have to stick with it or any progress may regress.
Best of luck to you. You are not alone. Your pain is real and it is physical. Remember sometimes the "cures" are as bad as the "disease". So many side effects.
I do hope & pray your husband can become more supportive. I have not been that fortunate but some patients have gotten lucky. Hang in there.View Thread
Slovene 54, thanks for your reply. Tests did not indicate sleep apnea. I know what it is medically but could you describe the symptoms to me? I don't snore or have any breathing issues. I also do not have narcolepsy even though the symptoms sound like that is a possibility. If you have any other suggestions or could recommend a specialist other than neurologist, pain specialist, rheumatologist, MD/osteopath ( which currently make up my team of doctors) please do so in a reply. It is very scary as it happens without warning & my body just shuts down.
Thank you, lots of luck, may you be awake when you need and sleep well when you want to.View Thread
Foreversore, thanks for your reply. My Vitamin D levels are very low. Have been on my 3rd 8 week regimen of 50,000 units once weekly. My thyroid tests all come back normal. I take ambien CR 12.5 mg ( generic) before bed. Some nights I sleep well other nights I fall asleep, wake up and cannot get back to sleep. Pain levels as well as stress seem to be linked to these "sleep attacks". If you have any other suggestions, please send a reply to this post.
Thanks. Pleasant Dreams.View Thread