Fatigue

[Kimmy56]

I was diagnosed fourteen years ago with Chronic Fatigue Syndrome.

I have debilitating fatigue and it has always been been the worst symptom for me. In the past year I've had muscle and joint pain which have been getting progressively worse.

Anyone else have joint pain? Suggestions other than Ibuprofen appreciated!

 

[Creola17]

I have joint pain that I treat with pain lotion that I make with essential oils and medical marijuana. I also use a spray that helps.

I grow marijuana and make edibles that have helped with joint pain.

I also take cannabis oil.

If I need a pill I use Tramadol which is similar to Vicodin but doesn't upset my stomach.

 

[RLG]

I was diagnosed fourteen years ago with Chronic Fatigue Syndrome.

I have debilitating fatigue and it has always been been the worst symptom for me. In the past year I've had muscle and joint pain which have been getting progressively worse.

Anyone else have joint pain? Suggestions other than Ibuprofen appreciated!

Kimmy, Very sorry to hear you are going through this. I, too, was DX CFS many, many years ago after a bad case of epstein-barr virus. It just wouldn't go away. It is so difficult--you feel SICK but no one really seems to get it. Doctors don't believe you. I always had a low grade fever and swollen glands--for a year and half. It comes and goes in waves/flares, for decades now. The fatigue got better, but never went away.
This current flare is what led to my DX of fibromyalgia, and I DO have joint pain. My knees, shoulders, lower back, heels, hips, jaw and more have been getting flares and progressively worse forever. The knees are the absolute worst for me--stiffness off the charts. Jaw pain had gone away for so long I had completely forgotten about it, but it came back about a year and half ago full on.
It is absolutely possible to have other co-conditions with fibromyalgia, such as arthritis. My joint pain does respond to anti-inflammatory, ibuprofen works well for me. Acetominophen does nothing at all for me and I don't tolerate opiates or pain meds well. Ibuprofen wasn't enough though, my pain is ambitious and relentless, whole body/systemic--there are times that I feel like no connective tissue in my body isn't affected.
I recently tried Mobic--a prescription form of Ibuprofen. I don't like it. Hurt my stomach and didn't work like the OTC variety for me. I have tried Relafen--affected my breathing. Naproxen gave me blisters behind my ears. I was unable to really give Volteran cream a fair shot--easy to use for localized pain in my knees but what about every where else? It is an N-said so cannot be used with ibuprofen: same goes for Arnica. Some people get good results with lidocaine, didn't work for me. The original form of Aspercreme with trolamine salicylate helps some. Icing. Heat pads. Frying pan upside my head when I can't take anymore

 

[RLG]

I have had fibromyalgia for 34 years and fatigue can be a great part of it, with daily pain, sleep problems, being too hot , being too cold, sinus inflammation , IBS, this and more trying to cope with daily living.

Oh, Freddie <<hugs>> and BRAVO!! You are an inspiration.
Sometimes I feel like "If I just...", like If I just didn't have this throbbing gnawing pain in this spot, or if I just didn't feel so exhausted...it would be fine. Then there are times when it feels like I'm chasing 'IT' around in circles, 'it' being the symptom du jour. This cream here, that med there, call this specialist, ignore this problem today but deal with another one head on.
We can get through it. If you are of an age to have been WINNING this battle for 34 years you may of an age to remember John Denver--he said "some days are diamonds" and some days, Freddie are COAL.
(Today is COAL for me...)

 

[sunkacola]

Fatigue is one of the worst parts of this for me. I used to hit the ground running every morning and be an energizer bunny all day. I never even sat down all day long; too busy doing active things, working active jobs. I got a job once working in an office and couldn't stand it because I had to sit all day.

These days, the fatigue is even worse than usual for me, and I think it is the unprecedented stress of being in the middle of one of the worst pandemics ever to hit the human race. Although I keep my personal stress low as always, the existence of stress and worry and grief and illness and death and impoverishment all around us and all over the world weighs on me very heavily, and it negatively affects my health.

There's nothing that can predict the future for you, Creola. It could be anything. The experience of others can help you to adapt to what you cannot change, and to change what you can. The first thing is to do your best not to worry and thereby make things worse. Live in the present moment, and be grateful for what you have and for what you can do today and let tomorrow come when it does.

 

[RLG]

Well said, sunkacola! <hug>

 

[Kimmy56]

Interesting! I too was dx after Epstein barr

 

[RLG]

Interesting! I too was dx after Epstein barr

Kimmy, I would really like to know more about your epstein-barr/CFS story, if you're comfortable sharing it. I don't want to hijack the original thread here, but if you are comfortable telling more (here or in a new thread/post) I think it would be beneficial. We've each come to these chronic fatigue and pain issues from different experiences. You would help me! Thank you.

 

[Kimmy56]

I dont mind sharing. Just sat down to look at some posts, but I have to leave in a few min. I'll reply sometime today.

 

[Kimmy56]

The best I can recall I was diagnosed with E. Barr summer of 2006. My symptoms were fatigue and nausea. No sore throat or fever!! I was losing weight like crazy and the doctors (notice plural) could not figure it out. After numerous test, mostly regarding GI tract, I read something that EB was often missed. My dr agreed to test me and sure enough that was it. By this time I had lost 20lbs in about 4 months as the nausea got worse. Was actually hospitalized for dehydration and to give me IV nourishment. Could not work for 2 months. I recovered but still fatigue and felt sore all over. Was then diagnosed with fibro.

I have read that fibro often follows a serious illness or exceptional stress. Well----prior to EB, the previous 10ish years were very stressful. Ugly divorce 1984, oldest son died 1987, mother died 1990, another ugly divorce 1995, father died in 2005.

I certainly believe stress harms physically (and not just a headache!)

Fatigue still worst symptom but pain running a close 2nd. But I cherish my 3 sons, 2 daughters in law, husband and 3 yo GRANDSON! Living life the fullest I can with frequent rests and Ibuprofen. Lol. Love to eat, shop, TV, girlfriends, reading and more!

 

[RLG]

The best I can recall I was diagnosed with E. Barr summer of 2006. My symptoms were fatigue and nausea. No sore throat or fever!! I was losing weight like crazy and the doctors (notice plural) could not figure it out. After numerous test, mostly regarding GI tract, I read something that EB was often missed. My dr agreed to test me and sure enough that was it. By this time I had lost 20lbs in about 4 months as the nausea got worse. Was actually hospitalized for dehydration and to give me IV nourishment. Could not work for 2 months. I recovered but still fatigue and felt sore all over. Was then diagnosed with fibro.

I have read that fibro often follows a serious illness or exceptional stress. Well----prior to EB, the previous 10ish years were very stressful. Ugly divorce 1984, oldest son died 1987, mother died 1990, another ugly divorce 1995, father died in 2005.

I certainly believe stress harms physically (and not just a headache!)

Fatigue still worst symptom but pain running a close 2nd. But I cherish my 3 sons, 2 daughters in law, husband and 3 yo GRANDSON! Living life the fullest I can with frequent rests and Ibuprofen. Lol. Love to eat, shop, TV, girlfriends, reading and more!

Thank you for sharing your EBV story! The first time I had it the symptoms were extreme fatigue, swollen glands, muscle aches etc after a bad upper resp. illness. It took months to figure it out and a year and a half later I was DX with Chronic Fatigue Syndrome ( that was the late 1980's). I have been retested 3 more times, the second time I was positive antibodies and and positive monospot for a a current active acute EBV infection was in late 2015. I too had lost 27 lbs. that time and I had spiking fevers, rash. Both times my liver enzymes were elevated. I was 47 yrs. old then, not your typical age for mono. I had been seen 7 times by 6 doctors and my dentist trying to figure it out. I demanded a monospot test and bingo. The Dr. then said he never knew someone my age could get mono, he said he "thought only teenagers got that." I fired him.
Kimmy, keep an eye this--you absolutely CAN GET RE-INFECTED. It goes dormant/latent. I have read many times through the years about new studies, it is not believed or known to be the cause of CFS or fibro/arthritis etc, but it is proven to be linked to those things. My internist told me 15 years ago that studies have proven past EBV infections to cause severe arthralgias later in life. I'm not saying I think it causes fibromyalgia, but I really think it can be a contributor. It goes dormant in b-cells and even nerves.

Fatigue is miserable. It is debilitating when it partners up with chronic illness and/or pain!