Avatar universal

Starting to think I may not have fibro, but something else?!

It seemed to take years of suffering before anyone would come forward and give me a label.
I did indeed seem to fit into all the slots of the given diagnosis and was the placed onto the merry go round that is self help and mindfulness and all the other stuff that comes with it.
Each person I met ranged from being very understanding or telling me I just wasn't ready to embrace self help (would you tell someone with broken bones to think positive and calming thoughts?)
I have to say that over time my pains and issues are getting worse and worse and I have been told I am on the maximum dose of fentanyl so thats it as far as pain relief goes.
I am now starting to wonder if I have fibro or something totally different as I am now in so much pain it is off the scale and almost beyond what I can bear.
The thought of being in this level of pain for the rest of my life is simply unthinkable and is getting me very down.
I keep being told I am depressed and thats not helping so they have put me on what I call "happy tabs" and told me if things don't change they may have to up the dosage, (really helpful).
If I could get at least some respite from this terrible pain then I wouldn't be so down, is that so hard to understand?
If it isn't fibro then what is it, I just don't know.
Sorry everyone, I am just so desperate for answers and help.
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Avatar universal
You may not still be looking at this, but for whomever is:  You could also consider finding a doc who knows a great deal about Ehlers-Danlos Syndrome (EDS), and get screened for that.  EDS causes multiple weird symptoms, and it takes a very informed doc to sort it out (and they are hard to find). Most docs will just test your joints to see if they stretch, and it’s not all about that. It’s also about traveling pain, and joints that stiffen up to protect themselves, and deterioration in multiple ways.  Standard physical therapy can be at odds with what people with EDS need, so be careful with that.  Just a thought.
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Avatar universal
I don't claim to have the answers but have your tried lisetning to 40 hz music.  there are some studies that say it helps.
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Avatar universal
I was diagnosed with fibromyalgia 30 yrs ago. You may have lactic acid built up. If so, stretching your muscles will really help. I have a stretching routine, but you have to stick with it. Also, your ph may be low, should be 7.3-7.6, if low baking soda can help raise it but you must monitor the ph, you want to keep it balanced-very important. If you have an underactive thyroid gland that can cause it. Lastly you maybe low in Thiamin. These are the things I work on that help me. I wish you well.
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2024756 tn?1615353204
Hi, I have had "Fibro: since i was 19 i am now 56, I was 19 when I caught the Epstein Barr Virus. One night in 1984 i felt a swollen gland on my neck, the next morning  I had a pounding headache, they both disappeared and then I began to have all over muscle pain, non stop since May 1984. I use to  have, still, but not as bad,  the Jaw Joint Pain TMJ that was making  me nuts, i did have TMJ surgery to cauterize the nerves behind the joint which helped, but guess what he found when he was in there that did not show on the MRI or blood tests? Arthritis, yes "CrabMeat" as he put it. Turns out not only did the EBV cause Constant muscle pain all over my body for decades, but it caused Arthritis,  so an Immune System Disorder reaction so to speak.
I caught the EBV in 1984, had jaw surgery in 1994, and in 2018 had confirmed osteoarthritis in my hands and feet now. funny I knew something was wrong back in 1989, in school my feet would hurt around the toe joints, and then in 2004 my thumb joint looked weird only on one hand, now its in both hands and feet. So to sum it up, i still hurt all over but along the decades found the cause and got a diagnosis: Fibromyalgia and Arthritis from "Chronic EVB" I never got full blown MONONUCLEOSIS from the EBV, however, just pain for the rest of my life. This has triggered muscle and joint issues , i have to avoid certain foods: DAIRY is the worse in order to Avoid Screaming Neck Pain, and other things that aggravate, MSG, Soy etc...
Epstein Bar Virus is in the Herpes Family so it stays in your central nervous system for life (it is like chicken pox that is in the herpes fam) hence MY chronic base of skull pain. Now in YOUR case, I think you best look into Arthritis in your jaw, but even though surgery helped me, i don't recommend it, as all i do now are Naturally things, I take NOTHING for pain. You no doubt have been told you just have to live with Temporal Mandibular Joint Dysfunction, but I do not agree, go see a Rheumatologist maybe they can offer answers but unless an MRI shows you are deformed in the jaw joints, don't give up. Watch out for certain coffees, some make it worse (i love coffee and had to taste around) and Tea, Black tea, the Tannins can make TMJ WORSE! my email is wendy.***@**** if you need to talk more, this goes for anyone reading this as well.
Yes i am in pain, NO i take nothing (bad reactions to everything except Straight GIN  LOL) i don't even take Ibuprofen, nothing, i just avoid aggravates and that helps keep the pain down. I'm reading the last few years that Vit D helps, but I don't react well to it. So in the meantime, a hot water bottle and 2 shots of Seagram's GIN a day is all i do. I wish there was a cure for EBV, my Mom banked my children's Stem Cells when they were born, maybe one day i can use them to eradicate the EBV, but t hen i could always catch it again, not likely though. Some people get EBV and it doesn't effect them, but every one is Genetically different. Go get your jaws tested for Arthritis.
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I just re read my comment, it looks like they wont allow emails here, that's ok i will get notifications, and return if need be. Btw, I saw every doctor and had every test in the world and tried meds that only made me worse, but it took my Gynecologist in 2008 to have the idea or  of running a Viral Test, it came back positive for EBV Core Antibodies (it had been there a long tome) "So THATS what the Swollen Gland on my Neck in 1984 was!!!"  I yelped.
"Yes, most likely" he answered.
And to think of all the THOUSANDS of dollars i spent on doctors who mostly thought i was nutty, all the while NONE of them made the Viral connection. Duh.
Also i get what I call "Rigor mortis" when i sit for too long, so yes it does feel like there is little oxygen in my cells. Plus last year i felt little nubbly bumps all in both my thighs, turns out there are only two things that cause this a Steph bacteria or.....EBV!!! Infection. i wonder if this effects my walking with the stiff muscles, hmmm too bad they do not do more research.

I have another suggestion: Chronic Sinusitis, this can cause Jaw pain, check it out. If this is helpful, the only thing i must stress is salt rinses with NO Preservatives. Simply Saline has it. I use that with the NetiPot daily (only use Distilled or Purified water PLEASE)
This helped you with your fibro, 30poundsmore?
363281 tn?1643235611
I am so sorry you are in so much pain. Have you tried seeing a Naturopath? They usually do tests that conventional doctors don't prescribe and also have some more insight into illness like yours. It would possibly be worth a try. I hope you feel better soon.
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Avatar universal
[[The thought of being in this level of pain for the rest of my life is simply unthinkable and is getting me very down]]
I know very well the desperation and discouragement that come with no answers to pain- and so do a great many folks- It's ver5y very frustrating indeed- I have many of the symptoms of FM- BUT, I don't have a single trigger point, or tender point, or whatever they are called- So I'm not convinced that what i have is FM either- but I can't know for sure- so the mystery remains- I think personally, it's a glycogen (sugar) distribution issue, where the cells can't get enough fuel to keep the muscles from tiring out within a short period of time- and this affects the whole body and mind (fibro fog something terrible)- After 18 years of searching for an answer, spending tons of money trying one thing after another- I'm done- No more searching only to be disappointed when it turns out it's not what i thought it might be- I dunno what i got, but i got something that has pulled the rug out from under me in the prime of life, and i guess that is that-
Rick if you don't have any bleeding issues- there are reports that tylenol and another pain reliever such as motrin, combined, work as well, some say better than, opioids- Tell your Doc the opioid you're on isn't cutting it, and ask if you can combine it with the two OTC pain relievers- the combo of all three might be helpful- but ask your doc first though- your opioid may have some tylenol in it already- so discuss this with your doc, as too much tylenol isn't good-  Also ask about muscle relaxers such as  methocarbamol, or baclofen or some kind- with these muscle pain issues- I'm convinced that a lot of the pain comes from the muscles being tensed all the time- I can't relax my muscles no matter what- Even when I try to concentrate on relaxing the tension in muscles, I quickly forget to keep relaxing and my muscles immediately go back to tensed up- After 35+ years of this, the body has had enough and now the pain is here- again, the muscles just aren't getting enough fuel to resist the strain of this constant tensing up- and so now, the pain is quite bad- it gets even worse in hot humid weather for me- the heat just drains more energy from me, and the muscles just really hurt during those days- especially the neck area- They call this muscle tension 'Bracing' (as though you brace for impact- the whole body tenses up, muscles tighten, and you 'brace for impact'- for soem reason, I can't stop my body from doing this- and i think after so many years, it's just worn my body to a frazzle ,and where i can't get the fuel i need to keep going, i just can't keep up anymore- it's very very frustrating-

Anyway- It's a real possibility we may never find out what's wrong, or how to fix it- We just have to come to terms with this possibility- It aint easy- by any stretch of imagination- We just have to learn to cope- learn to deal with no energy/strength- and adjust our lives accordingly- it doesn't seem fair- but it is what it is unfortunately-

Sorry you are going through it- I hope and pray you can find an answer- or at least some help medically- If those 'happy pills' don't help after awhile- tell your doc they aren't doing a durn thing- They tried foisting that junk on me too- they didn't do squat for me- and i gave it a good long try- with many different ones even, because i was desperate for relief fro m the pain and exhaustion-- they didn't- none of them helped- not even slightly-

You could ask your doc for Lyrica if they have you labelled as Fibro- or Gabapentin- but be aware- those meds are known to cause depression- so be very careful o them if you try them- and if you feel more and more down- discuss it with your doc to adjust doses- or try a different one- Most people that take it do fine, but the possibility is there- noone told me about it when i went on it- it did help some, I'd say maybe- possibly, 20-25%- not enough in my opinion to justify the cost and risk after i found out the drug could cause depression-  if it had helped 50-60 or so % I woudla kept on them- but they didn't for me

It's a long rough tough journey- very discouraging- it's not easy coming to terms with the fact that something bad is wrong, that noone knows what or why- it's very tough learning to adjust- learning to pace oneself- I hop you can some help and peace about it-
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I tried Gabapentin, didn't help & was concerned about taking the med. I do take GABA 750 mg twice a day.
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