Every day I feel like I have the flu, minus the fever. Has anyone who is familiar, ever find a medication that has helped. It use to happen periodically, but now I feel like this every day?? I need some relief. Please, any one who has found relief!
Mary
Hi Mary - so sorry itās hit you this hard!
Is this not just a fibro full flare? At least thatās how I experience the core symptoms: Ache all over, extreme tiredness, exhaustion, muddy-headedā¦ plus I have the fever as a feeling, only without temperature.
70 treatments, incl. meds, mostly harmed me, some (mainly physio-type) got the single pains down and cdnāt prevent a very full flare for a month now - bringing me to my wits end, altho Iām still trying to pace, exercise better, improve my sleep hygiene and now doing some psychotherapy.
Unfortunately there is no easy answer, as you probably know yourself having the diagnosis for 16 years. There are only a few meds which are proven to help a bit more than others, but usually a combination is necessary, according to recent research. If you believe meds can help you and your docs arenāt helping find something and you can change them: do so. But as you wrote in your intro-post 7 years ago you got awful side effects from them, so youād be like me and will probably react that way to all meds. There are none for fibro without side effects. And the main side effects are exactly our core symptoms - no winning there 
You can get 10 med, 10 supp & 10 herb & 10 physio suggestions from us here - importantād be to know what exactly youāve tried. And it definitely doesnāt help that someone here or elsewhere says it has helped them. Bin there, done that, no success. My best therapies (cryotherapy, acupressure, yoga, breath-holding, cold showering) are ones that friends suggested, or I developed myself (twist-stretching), not docs, not anyone on the webā¦
If you still feel youāre ānameā still fits, Iād suggest CBT, praps with trauma therapy, I donāt know if youāve worked on your car crash trauma? This is the one non-med thing which research has proven somewhat effective, so shd be standard. If one therapist didnāt help try another. Iād suggest they shd be certainly experienced with pain or with trauma. I tried 2 last year, plus one from the pain clinic next to the inpatient rheum./fibro clinic I was in, the latter had a few ideas, but unfitting and 45ā was just too short. Now - of the many counsellors Iāve been to for social phobia and relationship problems - Iāve remembered to go back to one experienced with trauma, which was very supportingā¦
Hold on - and if you like vent here more and share your experiences!
Iām staying clear of all meds now, cos of bad side effects plus that wd interfere with the acupressure that is working. Just trying some last supps and herbs (partly again). So Iām not that firm with the meds that are recommended in the UK & US (not here in Germany) yet, altho Iāve read tons of studies and experiences.
The reference-thread Iāve just started building up might help you if youāre looking for a list & description of āeverythingā, but itās just pecking open its shell. 
Fibromyalgia References: Symptoms, triggers, treatments etc. intertwined
My best treatments are a bit of a challenge for even those that think they would really try everything: Cryotherapy and cold-showering (which I did try altho I feared - like probably everyone - the coldād be bad for me, like cold weather is). So I donāt share these as much as I first didā¦ These actually are 2 things I use to get the flu-like Ache and feverishness down. But also sleep. Which is my biggest problem. GABA may be helping thoā¦
Hi Mary,
I know from experience how frustrating it is to manage your Fibromyalgia for months and then have it hit you full force and seem never ending. As JayCS said sometimes finding a way to get a good sleep is helpful, along with any supplements that you find useful along with mild exercise (if you can) may help you get past this. Make sure youāre staying very hydrated, drinking lots of water. I find a warm bath before bed with lavender Epsom salts relaxes me and helps with sleep. I canāt take any Fibro meds so far that agree with me so I canāt recommend any except for Amitriptyline which helps me sleep sometimes. Just know weāve all been there and support you. Let us know how youāre doing. Sending hugs.
Thank you so much BJ. Believe it or not I sleep well! I get 8 hours of sleep but get up at least once to pee. I take many supplements because like you, I donāt like the side effects of the meds I have tried. I do take Gabapentin and Venlafaxine. Both at the lowest dose. Maybe I should up them? At least the Venlafaxine?
I always say to myself I should take more Epsom salt baths. I just donāt like baths. Hard for me to relax. Always has been. As for exercise. I use to be so good about it. Now I use working around house and outside and my part time job as my exercise. Other than that, every other waking hour is spent in bed. I have NO want to do anything. It is so easy to often think and pray that I wonāt wake up tomorrow as I feel as I am just existing.
Hi Mary, one of my better doctors suggested that before I assume symptoms were caused by my fibro, consider what else they could be caused by. For instance, the constant sniffling could be hay fever or other allergies, the headaches could be eye strain or stress. The advantage to doing this is by isolating other causes, you can treat them directly, whereas the medications we take for fibro are complex and adjusting them canāt be done lightly.
Katya, believe me, I have been checked for everything. I use to go to the doctor when I single issues like soar throat, headaches, stomach issues, sciatica, painful feet and more. I would go thru every test, procedure (like colonoscopy) there was and I always got the same answer. Everything looks good. I have really good doctors, too. I just donāt know what else they could do. In fact, I did go in a couple months ago with these current issues. Nothing really done and he said heād see me in June. So I give up!
I definitely understand this feeling. Although, for the last few months, this symptom has not been as prevalent. It was my main complaint for years.
Justexisting - Iād be worried that hopelessness, not wanting to do anything or wanting to stop it all wd increase if youād stop the Venlafaxine?! 
Or wd you use alternatives like Duloxetine and/or CBT? :- 
If you donāt like baths and they donāt relax you anyway - do you use other types of magnesium other than the sulfate (the Epsom salt)? The help of baths isnāt proven, so probably primarily subjective, whereas intake of magnesium is.
Not wanting to exercise sounds more like you need more inner support and not that you are not able to. Of course housework and job are a lot of exercise. If you did less of that and more sporty exercise or something else thatās good for yourself, wd you feel better, wd that be possible? Whatād happen to your feelings if you cd just stop the housework and your job, bc you are sick, āhave the fluā. 
Justexisting - is there anything good that you could do for yourself to make yourself happy? To self-care, to self-comfort, to make you smile or even laugh now and then? Anything you used to do but have āforgottenā, lost contact to? Something that may need to be adapted. Or is there anything new possible, some good moments youāve had which you might increase bit by bit? (In really bad times I immediately enjoy moments of a second of not having pain, not thinking about past or future, just here-and-now, if need be I keep a good-moment-diary. Writing here helps me, comforts me.) 
@all I correct defining flu-like symptoms as the following or how wd you adjust it?:
heaviness, ache all over, fatigue, more pains, rest need, sleep need, sleep long. With or without fever-feeling, clotted/runny nose, headaches/migraines.
@Katya: Always a good thought, agreed, thanks for the reminder! 
I have so many of my symptoms down, esp. pains. Docs or meds werenāt helpful tho, it was pinpointing them with diaries, analyzing & finding ways to prevent or alleviate them physically or naturally.
The fever-feeling is a nice example, even tho itās one that @Justexisting doesnāt have. I always grouped it more with the Ache, something autoimmune, and so thought I had to wash it away with cryotherapy or cold showering which does help for a time for that and the Ache too. Now by comparing it to tiredness Iāve realized itās telling me to get a nap quick.
Unfortunately sleep along with Ache and exhaustion remain my main problems, and like with @Justexisting Iāve had āeverythingā tested for, incl. spinal tap & autoimmune. Hoping GABA plus remains the answer, like itās been seeming for 6 days now, but Iām still sleeping 10h which isnāt where I ought to beā¦
For me its the heavy feeling. Everything aches. Hurts to lift my arms and always feeling exhausted. Its all in the body, physical, minus the fever and headaches.
I tried going off Venlafaxine and it was not pretty. Anxiety really took over as I was weaining off. Dicided I am a person that needs to be on it.
I do take magnesium supplements. Magnesium Malate
My job is the only thing that gets me out of the house and socializing. I thank God for this job. I also need the money to stay in my home. I only work about 16-22 hours a week and it is not a stressful job. There is a small work out center at my work. Problem is that I start early and when I am done, I am to fatigue to go use it. Everyday I say Iām going to force myself tomorrow. Then when tomorrow comes I just canāt do it. All I see is my bedā¦
Everything that made me happy was physical. I was an athlete, high school, college and after. Once all my problems started that ended. I had always been very social. The one with all the friends that the friends would call on. Friends donāt call anymore. Being wanted and needed I guess I miss. Iām 50. Single/divorced and an empty nester.
Yup, thatās what I thought with Venlafaxine. Counselling youāve probably tried too.
Arms - same here; my acupressurist is working on it, tough job.
Magnesium malate: Same here, cos of hyperacidity/IBSD. 
Wow, 16-22h/wk! No wonder youāre struggling! 
But it sounds as if your job does make you happy some extent, just itās too much or too much in one go?
I wdnāt force doing a workout after work, I doubt thatād make it better, rather worse - it would me, Iād need at least a break, if at all. Could you try a 4-5 minute workout before work, without using the workout center, like this: https://youtu.be/U6etLKswjq8? Thatās what I manage at the moment - but not when Iām in the fullest flare.
Can you go to bed earlier and get up earlier and do something nice before work?
Could you take a break at work and praps even lie down regularly, rather work longer, in several shifts, but still have more of your day? Thatās the only way I can.
Just thinkinā¦ 
- if you canāt take these gently meant suggestions at the moment, just ignore meā¦
You crack me up! Where on Earth did you find that exercise video? I can manage that in the morning.
Do you have neck issues? Iāve had a lot of bothersome neck pain. I know it leads back to a car accident when I was 16 and a few years ago an MRI that showed degeneration/arthritis setting in. Not sure what to do about that. Trying to afford all this crap sucks too. Iām so doctored out! Especially most times my answer is they can not find anything. Ugh!
Thanks for your great replies. Been a LONG time since I talked about my issues with any one. Appreciate it! Hugs!
So glad to hear
Actually I read about it first The Scientific 7-Minute Workout - The New York Times, and then thought thatās neat, Iāll try it every day. 2nd day I forgot 
, but at the moment I really am doing it every day. I looked for examples on youtube, and found this nice and short and the music on it motivating, but you can get the same vid without music on youtube too, or just turn it down of course.
Yep, neck here too 
- osteochondrosis a doc saw on my scans (MRI, scintigram and x-rays).
I joined a neck/back exercise group 6x (pic #11+12 here humiliating not being able to keep up with 70/80-year-olds, so I started doing a short workout before to boost my ego), found some neck exercises on my yoga DVD and my acupressurist showed me neck exercises too the other week. Theyāre all similar, stretching your neck in all ways possible: up down, left right, up left down right diagonally, ear to shoulder. I now do them quickly when necessary, e.g. after lying down a long time, on my bike trying to turn my head and even started doing them at night, which works too.
Yup - I humour the docs once in a while, telling them what Iām already doing, occasionally they do me a small service 
by having a new ideaā¦ 
- which mainly backfires, the last was melatonin for instance which made me drowsy-sick for one month. But mainly theyāre just there to make sure that nothing dangerous is going on. The person who has the most ideas for anything and everything is my acupressurist, and gives me āhomeworkā all round, whether itās palpating my belly (which has improved my bladder pain), rubbing my hands with olive oil and sugar (which I donāt like doing much yet), imagining to cut off any thoughts & pains with scissors or a chainsaw (which does help a bit at night) or going out in the sun for half an hour a day (which I do anyway). Usually about 3 new ideas a week. Other ideas and checks on them are from people on the web. What has helped me 5x more than the docs are suggestions of friendsā¦ (cryotherapy, cold showering, breath-holding and yogaā¦)
Going out in the sun for a little bit each day is good for your bod & mind! 
Hehe, the āsunā has now got a favourable double mention in the treatments reference section 
I stopped going to doctors now because there is nothing else anyone can do. Hoping for something new that is scientifically proven in my life time. I wish I could afford an acupuncture. I do know dry needling helped my neck and shoulders. Problem is with all of itā¦ you have to keep going.
Improve your bladder? I get bladder pain, but it cycles. It may come on for a day or two weeks and then go away for months or weeks. Crazy! Never been able to get a diagnosis. But have had colonoscopies with biopsies and nothing wrong. Tested for Gluten allergy, negative. I looked up IC, intersticial cystitis and those are the symptoms, but people diagnosed have the symptoms and treat, but mine only flare??? I just have the strangest things happen in my body. Canāt remember if I mentioned I had Lyme for 12 years before it was finally diagnosed. That was fun, too. All the symptoms, but every doctor said there is nothing wrong! My life story. Iām afraid Iāll have something deadly and Iāll blow it off.
This has really helped me, talking with you. Thank you SO much for reaching out! I see your in Germany. I could really use a vacation. Maybe Iāll come visit! Take care and God bless!
Hi JE,
thanks! Yeah, Germany is definitely worth a visit! Glad to see you hereā¦
Oh dear, Lyme, and this all taking so long to find it outā¦
No wonder youāve stopped going to docs, Iām not going much either, but cardiovascular still needs checking, my GP sent me to an endocrinologist, but everything was OK and āmy nailsā & warts āsentā me to a derm, but they were all pretty OK tooā¦
I also checked interstitial cystitis, but it doesnāt quite fit. Interestingly GABA is improving everything, including how often I have to go: I can now drink as much as I want in the evenings and still only have to get up only 1x from that, 2-3x altogether. Soy drink at least - havenāt tried more watery drinks yet. I think that painās got a bit better too, but Iāve been palpating my belly as well, so it might be that. Just hoping itās not going to habituate too soonā¦
Blessings!
Nice to hear from you! I forget we are on a site I speak to you like I am personally emailing, lol!
The IC: So you had pain too? Does it cycle like mine, too? I had several appointments to see a urologist, but by the time the appointment came, my symptoms were gone. When I have the symptoms I get up twice a night to pee. When I donāt its just once. Do you think this is Fibromyalgia? I donāt know if I should still try to see a Urologist. There is no treatment for IC. I saw there is just a medication and I donāt need any more of that! You mentioned GABA. I have that in my arsenal, but currently not taking. How did you hear of it for this condition? Maybe I should start taking it, again?
Have a beautiful day!
Mary