Dear Frustrated,
Hello again. Ummmmm, I hate to sound like a broken record, but to clarify, when you say you tried massage, if you went to a physical therapist or chiropractor for that, you can get far better results if you go to a Swedish massage therapist, as I suggested. There is a difference beween the stuff PT and chiro can do, and what several sessions getting Swedish massage can do.
One time I could barely walk because of an old back injury that got worse, I'd get intense muscle spasms in my back and legs, I was all bent over, limping, and went in saw a Rolfing massage therapist, which is a much more involved and rougher version of Swedish massage, which I do not recommend Rolfing for someone not used to these things. Anyhow, after the first massage, I was still sort of stuck, but the therapist told me when I came back the second time, she would unstuck the rest of me. She did, and I cannot tell you how much better I felt, took 20 years off my wrecked-up body.
Now, on the fibromyalgia deal, which all three of us who have posted agree with that diagnosis, I would suggest you go back to the doc who diagnosed it and get thee some better pain relief medications. Nearly everyone who has fibromyalgia MUST be on satisfactory medications, and it takes a little time to get doses and drugs right. Just like on of the other posters, I am also on Lyrica, and I too take it in combination with several more drugs, one an opiate, another that is anti-spasm type stuff, and therefore taking a combination of medicines is really sometimes the only way to get around heavy doses of, say, morphine, which all of us who endure pain really need to be on, but docs save that for people who have cancer or their arms torn out of their sockets.
One more thing, we all need support for our conditions, especially as they start out and no one understands or is willing to help out. It took me about five years to convince my own relatives that I was in endless pain, and a couple years to get up with the right docs who were willing to treat me with the right meds. So, in order to get some substitute support until you can find folks who will be with you who understand, you can do two things: Find a fibromyalgia website where that's all they do is fibro, and find one that has forums, you will generally find folks who are very suportive and available, and the other thing to do is also seek out a county pschology clinic where care is cheap, evening appoints are avail, and start talking to a psych doc there on, say, a weekly basis or whenever it's convenient for you, and it can be a huge relief to unload on them and they can be so supportive and helpful in tips with coping, and sometimes are the ONLY true friend you can turn to.
Hang in. We want you to keep trying to get at least some GOOD drug relief, not things that simply do not work, and any other assistance that you want. I'm glad you came here to talk to those of us who have been down that same path you're on right now. There IS hope, altho it truly is discouraging, as you put it, when you're in no condition to keep looking for help, but you MUST. I hope all our tips will steer you in the right direction to get you to feeling better more rapidly than you've been able to so far.
GG
Thank you for ur posts. At this point I appreciate any kind of input. I have tried pt and massage but it actually made things worse. It is very discouraging, especially when u have doctors who won't listen to you and a lack of a support system.
I have to agree, It sounds like fibromyalgia. I've had it for 20 years and now I am on disability, for that and other health problems. It will cause chronic fatigue, widespread pain, and for me the neck and shoulder area is the worst, depression, cognitive problems such as memory, and feeling like you're in a fog, mood swings, and digestive issues as well. Not a pretty picture we're painting here, but there are medications that can make it tolerable. I take Celebrex, Lyrica, and Flexeril, and I do well with that combination. You might need less meds, as everyone responds differently.
The cyst may be completely unrelated, and it may stay the same size and never cause you any problems, so don't get too worked up about it yet. Take a wait and see attitude about the cyst, but definetly get help for the fibro. Good luck.
How big is this cyst?
I would not get too worried until another scan is done in 6 months.
In my opinion, your symptoms sound more like Fibro symptoms.
Gosh, I'm sorry you've had to wait SO long to see these docs! I have some ideas about what's going on with you, based on my own problems with pain, take what you want and leave the rest.
I think I'd go with the neurosurgeon, especially since he said it was a cyst. The second scan, that's to see if there's any changes, they don't want it to get so large that it inteferes with the normal function of your brain. So, go with the flow, don't feel like you're "waiting" for that scan, becuz I don't think that's at the core of your difficulties.
Rather, I think your headaches and shoulder pain are connected, you may have wrenched and knotted up some muscles in your shoulder and neck, and that would give you headaches, and until the tension in those muscles is released, you may continue to have problems. So, I would suggest perhaps going to a sports injury doc, they deal with things like rotator cuff injuries all the time, and he can evaluate you and perhaps order physical therapy. On your own, you could instead visit a professional massage therapist, deep Swedish massage a few times might break up the pain in there and relieve your headaches.
Now, anytime a person is in a lot of pain, they will have your other symptoms of being tired, not able to focus, and emotional problems. Pain is real distracting and it's frustrating. If I did not have the pain control I have, I'd have gone crazy by now. So, since you have fibromyalgia, which by the way is a very debilitating illness, it's bad enough that Social Security Disability will give you money for it, that you should visit the doc who made that diagnosis or go to another one with the papers that have that diagnosis, and get proper pain relief. It will go a long ways in making those thinking and feeling problems go away.
Hope something of this helps you out, go ahead and focus on the idea that you have fibromyalgia and get better pain relief for it, and get some physical treatment for your shoulder and neck area. Go for your rescan in six months, but put it on the back burner in your mind. Keep us posted if you like, and perhaps someone else might throw their two cents in.