So after 18+ months of pain and no diagnosis, I’m trying to find an answer myself.
My pain started in my left knee – constantly aching (I compare it to having a migraine in my knee) gets worse by end of day to the point of not being able to weight bear. I can’t squat down or kneel on this knee. I have had so many specialists – Orthopedics, Rheumatologist, Pain specialists and every investigation you can think of including knee arthroscopy and a nerve block. All have found a perfectly normal knee with no inflammation. I have always thought the pain would be arthritic but no physical signs of arthritis. I do have other pain throughout my body - hip, lower back, shoulder, neck all of which I had put down to my body having to deal with limping and limited sleep/sitting positions. And after reading information about fibromyalgia, I realise I have a lot of the symptoms.
So now I’m asking is this fibromyalgia? I have read the symptoms and I have trouble sleeping, memory problems, morning stiffness (all of these I put down to tolerating strong pain for so long), headaches and IBS, both of which I have had for a long time. Also I’m sensitive to light, sound and temperature again thought it was because of low tolerance to everything in my life from pain.
I have gone through the pressure points and I can tick off 14 of these. No pain relief even comes close to helping with the pain. I’m really over this and not ready to accept this pain for the rest of my life. Believe me no one is going to want to live with me soon with my intolerance levels being so low.
Any ideas, am I on the right track or do I keep looking for answers.
I have been an almost lifetime sufferer of fibro, so I can commiserate with you. No one here can diagnose whether you have fibro or not, but you certainly sound like you have the same thing as me. The only answer to your questions, would be to find a fibro/chronic pain friendly GP. I can't really help you with that much, because we don't have a clinical services directory.
So if you let us know what state you live in and the nearest major city, someone on the forum might be able to suggest a good GP for you to try out.
Just something else for you to consider. If you have any spinal problems, neuropathic pain can cause all sorts of funny things.
I have a lot of old spinal injuries that to this day give me hell and because of the neuropathic pain, I take Lyrica, which helps with the morning stiffness and pain mostly, plus it helps me sleep a bit better too.
Now, a few years back, my feet decided (for no apparent reason) they were going to start burning at around 1,000 deg C, plus they felt like I had suffered bamboo torture, where my legs were strung up and the soles of my feet belted with bamboo poles until they were pulp. That is how bad they feel and that often seems to be the level and intensity of the pain. Exaggerated description I know, but the pain is so intense!
When it is really bad, I end up on the side of my bath with my feet in a tub that has cold water in it and all the ice bricks out of my freezer. I even sit my feet on ice bricks under the arches to relieve the intense pain and heat. And it actually works very well. It's like my migraine headaches. If I freeze my neck when I go to bed, I can break the cycle that started several days ago and the migraine will go away, until the cycle of pain starts again that is. I can often get many days or even some weeks before the cycle of pain starts again.
In my feet though, they still feel badly bruised even after taking them from the cold water, but at least I can walk on them. The next day they do feel much better.
Drugs don't do squat for me, except make me very ill. So I can only take minimal amounts.
Anyway, all those other symptoms you have mentioned, I have had and still get. I have been tested for heart disease, cancers of different types; I even had sudden hearing loss many years ago and my hearing and ears were okay, at the time. Although, I am now wearing hearing aids in both ears. Who'd have thunk aye!
If you would like to talk about this more and compare notes that might be a bit personal to put on the forum, just email me offline and you can give me some more info about where you are located. Don't post any personal information on this forum. There might be someone on the Board who can give you some ideas of GP's if we know exactly where you live. I can't promise anything though!
I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)