I had a very disturbing experience. This last Wednesday afternoon I started feeling fatigued. As the afternoon and evening arrived I started feeling weak. Then Thursday the progression of weakness was so bad I had to call a friend to pick me up at the store because I couldn’t drive. That evening I ended up in ER. I could barely walk. Each hour the weakness continued. I had a CT scan and labs drawn all which came back negative so the ER doctor discharged me. Oh, and I wasn’t tired but it was very hard to keep my Evers open. I’m skipping the part about the poor treatment I received by the doctor and nurses after everything was negative. I believe they started thinking either I was making or faking all this or that I was severely mentally ill. My sister drove me home. She helped me to my couch and I fell asleep. Friday I woke up much better and could walk and drive without any problems. Has this weakness ever happened to anyone else? I have my normal Fibro flares and fatigue but this was quite different. Was this Fibro related? Did I just do to many things and it caught up to me and I was experiencing severe exhaustion? Is this normal? I really hope this has never happened to anyone else. I have only had fibromyalgia since last July.
Hi @Freedom! That had to be a frightening experience for you. The main goal of the emergency room is to stabilize patients and have them follow up with their doctors. I’ve been going through this with my sister. She wants more to be done, but that’s the main purpose of the ER.
With that in mind, I would definitely encourage you to follow up with your GP. My guess is that it is indeed related to fibromyalgia and overdoing it, but since this was the first time that it happened so extremely, it’s worth following up on it.
I’m so sorry you went through this.
Yes this type of fatigue has hit me several times where I even couldn’t get out of bed.
I do believe it is Fibro related. A symptom of too much stress put yourself in a form of different flare possibly related to Chronic Fatigue on come.
We need to keep journals on these and what the day before, what we ate also.
I have had fibro since 1999 - I have those episodes frequently. Like many fibro symptoms, not much that can be done other than waiting it out. Last year I was in so much pain & fatigue, I forced myself to start exercising. I have heard since the start that it helps. Started with 20 min. on my home elliptical machine. Worked up to almost 2 hrs. every other day, 45 min. on alternate days. I added working out on a Total home gym in addition to the elliptical. I have been seeking relief with meds for over 3 yrs. with no positive results. Exercise does help a lot but is only one small part of treatment. I doubt I will ever stop the exercise, my goal is exercise every day. I come close to that most weeks. You may not be ready to start but please keep this in mind as you struggle for relief. I have resorted to seeing a doctor at Nashville Hospital Rheumatology dept. - no easy road since it is 500 miles from home. My appt. is the end of July. I last had meds that helped in 2013 so this is my hope now. They are a research hospital linked to Vanderbilt University. Good luck…
I’m interested in knowing what are the other parts of the treatment besides exercise? What are they doing for you at this hospital vs others you’ve been to making it worth the long drive?
Defiantly part of the fibro, chronic fatigue syndrome is the name for it. I had it really bad for almost 2 months. I would get up, feed the kids & go back to sleep for the rest of the day. I was lucky to be awake 4-5 hrs a day. The doctors didn’t do anything for me & it was a fight to get over it. Exercising is a big key in helping w/pain & fatigue for me as well. I’m down to only taking pain meds 2 times a month now & hoping to keep it that way.
Do you mind me asking what the name of the doctor you are going to see? I live in middle Tennessee. I have had Fibromyalgia for around 27 years. I haven’t had a doctor to treat me for Fibromyalgia since 2010 when my doctor retired. I have a primary care doctor but she can’t write prescriptions for pain medicine so I have been going to a pain management clinic. The whole time that I have been going there I think that I have only seen a doctor one time. I guess that the only good thing to come from going to the pain clinic is that when I started going to them they sent me to have a lot of different tests. By doing that it showed that along with Fibromyalgia I have several other conditions causing me to be in pain all of the time. When the pain clinic received my results they were surprised that I was able to do anything and they told me that they didn’t have a problem with continuing to prescribe pain medicine for me. Of course, that was before all of new regulations on pain medicine.
I can tell you what I know, Rheumatologists do not accept any patients without a referral from another doctor. My primary is an advanced level nurse practitioner who suggested Vanderbilt. Last month I told her I was ready to see if they would see me. She sent my records from the past 4 yrs which included my visits to rheumatologists as well. Vanderbilt assigned me to a doctor, I will look up the name. I have not even researched him yet, however at this point I have to trust Vanderbilt. So I had a 3 month wait to see him in July. With the pull back on pain meds I am thankful I avoided the pain clinics. I have many of the companion conditions that have been documented in fibro patients. I am on vacation but I should be able to access my Vanderbilt account & will forward the doctor name. Just remember I have no idea what he is like. They have many doctors in their Rheumatology unit. Just google Vanderbilt hospital to see some info. My husband called them prior to my primary appt. They advised that with the access to research they are on the cutting edge. I live in Sevierville, I left behind a fabulous neurologist that was very creative with meds for my fibro, he did a lot of off label meds. The doctors in my area refuse to go to far off label…
For fatigue issues with fibro…i would read up on corvalenM or its generic versions.
For decades it helped me tremendously with the fatigue…until my vit d crashed… since then it still helps but not quite as much…
Does everyone get their vit D levels tested ? When mine dropped to 17…i felt 90 and did not feel better til i got my numbers back in the 40’s…
I have my vitamin d levels checked by my endocrinologist and it is always low. I’m supposed to start back on 50,000mg twice a week.
Thank you for the information. I will check on Vanderbilt’s website. I think that it was a Rheumatologist at Vanderbilt that diagnosed me with Fibromyalgia but that was almost 30 years ago. I live in Columbia and when I was first diagnosed there wasn’t much information about Fibromyalgia. I ended up going to 3 or 4 rheumatologists before I got fed up with the lack of treatment and I gave up on them. I lucked up because the allergist that I was seeing at the time when I mentioned to him that I had been diagnosed with Fibromyalgia he told me that he had Fibromyalgia himself. I asked him if he would treat me for Fibromyalgia and he agreed. I was so lucky that he did because he knew what was going on in treatments and he would read articles that I took to him. That was how I managed to get on the medicine that I am on now. I’m sorry that he retired but he told me that because of the way the government was cracking down on doctors and causing so much extra paperwork that he decided to retire. Now, the doctor that I am using as a primary care doctor only sees me twice a year but even at that she doesn’t do anything except to renew my orders to go to the pain clinic. The endocrinologist that I go to is very good but she isn’t able to write prescriptions for pain medicine so that is why I had to go to the other doctor. I guess with everything that is going with doctors not being able to write prescriptions for pain medicine any longer that I might just stick with how things are for now. I hate being on pain medicine but I have fractured so many bones along with Fibromyalgia that I have to take something for the pain. I’m sorry for the rambling post. I hope that you are having a good vacation and thank you again for the information.
That happened to me before I was treated for Lyme Disease. It feels like your body has the flu and every step you take is work.
I’m so sorry you ended up in the ER. I haven’t had very good experiences in the ER due to pain. Like you, after the tests come back negative, I receive poor treatment. Most of the time I try to deal with my symptoms myself, at home.
That is one of the challenges of fibromyalgia. It’s like living in an alien body where wacky things go wrong and you never know if its related to fibro or the beginning of some new medical issue. In this case, it sounds like fibro. I’ve had the bone-crushing fatigue and weakness, where I just can’t get up.
Someone else mentioned Vitamin D, and I think I’ll have to get mine checked. I have a Vitamin B deficiency. Doctor put me on 1200 mg of Vitamin B12 and told me I should be taking this high dose for the rest of my life. I haven’t noticed an improvement from it but I’m still taking it. The biggest improvement I had was taking magnesium - I take 500 mg per day as a minimum. I talked to the pharmacist and he said that as long as it isn’t causing diarrhea, you aren’t going too high on your dose.
I too exercise. I went to a 4-week, full-time Pain Management Clinic (which was so helpful!). They had us doing specific fibromyalgia stretches and then walks every day. They told us to exercise as long as the pain doesn’t increase - if you are exercising and your pain is increasing, you should stop. This can be quite challenging, as my pain can increase just by opening a case of Perrier water (1st World Problem?). But I still try to move every day. The clinic taught us that, while normally exercise is used to improve the body, with fibromyalgia it is used to ensure your body doesn’t get worse. You are trying to maintain the status quo.
Feel better soon!
The doctor is Joseph Huston, I would be happy to let you know what he advises for me. I will also keep in touch to let you know if I gain some relief.
Hi, I’ve had severe exhaustion several times through my years of Fibro. Besides sleeping for 14 hours a day, I also drank a supplement that was made from a variety of fruits and green veggies. It gave me lots of B vitamins which helped to heal my body from the stresses that caused my exhaustion. It’s called the Super Greens Pak and is made by Natures Sunshine. There are 30 envelopes in a box. I just dissolved them in a 8 oz glass of water. The taste was not bad. I hope you will get some relief.
Amen. 1st it was: “what’s your pain like now, on a scale of 1 to 10”. Now they don’t even ask? Their jobs, reputations and whatever are more important.
Hi. I have those symptoms almost daily. I have to reschedule dr. appts. constantly as I feel to fatigued to drive the 30+ miles to the dr. I kept trying to find a way to describe to dr’s how fatigued I am. I finally came up with it’s like when you’re watching a good movie at night and you keep falling asleep. No matter what you do to try to keep your eyes open, you can’t. Laying down all the time weakens my muscles, which makes me even more tired. There is so much I want to do, but the fatigue is my biggest obstacle. I have tried many supplements that are recommended for FMS/CFS but none have been helpful to me. I have been on Vit D3 for many years. I have an appt. with a neurologist next week and hope he has knowledge of FMS/CFS. If I get some good info., I’ll let you know.