Pain And Stiffness Are Terrible!

[GingerA]

Wow! Lately my body hurts all over and the muscles in my shoulders and neck are so tight they feel like they are going to snap. There is a constant pain running up the back right side of my neck and into my head. the skin on my arms and legs hurts just to touch. I usually have episodes of severe pain in the winter but they don't feel like this. Those episodes feel like they are down in my bones. This feels like I am about to snap in half. Any advise?

Also, all of my joints pop when I move. Even the joints in my shoulders

[cgnursegirl]

I have "seronegative spondyloarthropathy". It is a long term, but basically means arthritis like ankylosing spondylitis (another long word) that is inflammation of the spine, and shoulder and hip/pelvis bones, it can cause peripheral arthritis. The seronegative means that there are no positive inflammatory markers but I have inflammation and joint damage. It is autoimmune. I also have colitis and food allergies. It is supposedly associated with that. I was extensively tested and all I am given for it is naproxen and tramadol. I also have "peripheral neuropathy"--hand and foot nerve pain due to the autonomic damage. Sorry I don't have any pain relief advise--besides heat and staying warm, especially this time of year. I do hot baths, warm blankets, extra layers, etc. Icy Hot rub downs also help me. And using music and mental imagery or sort of a meditation type thing. Maybe you should ask for a rheumatology consult or nerve testing by a neurologist. I know your pain. I am hurting right now, laying down on the couch with my laptop. I hope you get relief soon.

[issie]

Yes, can so relate. Have you been checked for EDS?

[sandymbme]

I am in agony with this weather, too. Can't sleep, my hip and head hurts so bad it is all I can do to keep from vomiting. I am maxing out my pain, nausea, and migraine meds, and getting only minimal relief. I HATE rainy, cold weather! Am really, really trying to convince the Mr. to try for a transfer to San Diego, where (I hear) the temp and weather is pretty stable all year long. If only he could get a job that would accommodate the higher cost of living! Maybe a winning lottery ticket? A girl can dream!

Sandy

[issie]

Just got back from a week in San Diego. Not good. It had a marine layer nearly the whole time we were there. It is a gray overcast with soggy clouds. I hurt a whole lot worse there and the greyness of the skies wasn't good for the mood either. I'm in Phoenix and it is sunny almost all the time. But, the summers are absolutely HORRIBLE. This is my second year here. My favorite place of all the places I've been is the Big Island of Hawaii - but there aren't a whole lot of docs there and it isn't set up for handicap people - at all. But for climate and scenery - love it there.

[GingerA]

I went to my first neurologist appointment today and he listened but it seemed like he was just tolerating me. They did some xrays that of course came back negative. So now what? Am I back to yelling at docs because they won't listen to me?

I feel like locking myself in my house and hiding from the entire world!

[issie]

GingerA,

Next doc - is a rheumatologist and have them check you for Ehlers Danlos. They do a flex test for that. You can look the test up on-line and do the bends and flexes and you can just about determine for yourself if that's an issue. Oh, so knowing how you feel. We've all been there.

Issie

[sandymbme]

I have so been there! I used to swear my ailments were terrified of radiation, because every test I had, whether CT, X-ray, or MRI, would always come back negative. But on the occasions that they had to actually open me up, for what ever reason, the appendix that looked fine on film was angry and red and had to come out immediately. Same deal for my gall bladder! And when I would try to explain to doctors that things just weren't always what they seemed with me, they would look at me like I was crazy, some sort of surgery junkie! Which given how badly I recover, I can assure you that is the LAST thing I want to do!

It can be so very difficult getting the care we need. Having a rare disease forces you to become very self-educated, because you frequently run into doctors, even specialists, who have no idea what it is. Even if they do, a great truth to remember is that while they may be a specialist in their field, you are the expert on YOU. If you are not having your pain issue address, and to the best of their ability, resolved, I encourage you not to give up. I have found I get the best results phrasing things something like this, " I appreciate you running those tests. Clearly this did not yield us any answers, and my pain is still unresolved. What do you suggest we do next to evaluate and treat it? Should we consider a referral to physical therapy and/or pain management?" I find that asking more open-ended questions is more effective than saying, "But I am still sick! What is wrong with me?" and usually gets better results. My mom is a nurse, and my dad a pharmacist, and both of them have told me that physicians in general are very solution-oriented. They tend to care less about root causes than we do, and more about cures. So asking them about treatment plans usually, (although sadly, not always!) gets a better result. Hope this helps!

Sandy

[kclynn]

Sandy, what is so hard is that you can appear "over educated" and the medical professionals do not like that and are very suspicious of it even if they aren't personally challenged by it.