Fibromyalgia Community
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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.
2 Responses
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-
363281 tn?1590104173
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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