Does anyone get...

[Aylasnan]

random pains throughout the body that only last a second or so? Also, pulsing sensation around the middle towards the back?

[Dirty Don]

Yup, the roving pain is one of the common symptoms of active & aggressive WG. Not sure about the back, could be many things in there. Keep at your docs, they have to respond. I know the system is different there in that you can't go in and yell at a doc or just fire them and move onto the next...but I'd consider it if they don't move on your condition. WG needs aggressive, not passive wait & see, action. Best to you.

[Pete]

I agree with Don.

[Aylasnan]

I've also been waking up with something new being sore every few days. Sore arm - can't straighten elbow, sore neck etc etc. I've been putting this down too sleeping awkwardly. The same with pins and needles in my hands.

[Pete]

I've also been waking up with something new being sore every few days. Sore arm - can't straighten elbow, sore neck etc etc. I've been putting this down too sleeping awkwardly. The same with pins and needles in my hands.

At your stage with our dumb disease, I would be more prone to attribute odd symptoms to active disease than to other possibilities. I have tingling in my feet due to wegs-caused nerve damage...

[Birdie]

I've also been waking up with something new being sore every few days. Sore arm - can't straighten elbow, sore neck etc etc. I've been putting this down too sleeping awkwardly. The same with pins and needles in my hands.

In the beginning the "pins and needles in my hands" was an annoyance. They became sudden shooting pains which were like a nail gun shooting a nail lenghtwise along the veins in my hands. A few days after that started my hands were useless, crippled, contorted... any movement of fingers caused the nail gun to fire. Random veins in my arms and legs would become tender for a while and sometimes it would go away, sometimes it got much more than tender. I had veins in my legs and arms turn black and swollen. They looked as if I had traced the veins with a black felt tip marker and put red highlights on either side. I have not had that, not one tiny bit of it, since 20 minutes after starting prednisone.

If your other aches and pains are in muscle and soft tissue rather than joints, then that is also what I experienced while trying to get a diagnosis. Started with shooting pains in muscles, then muscle cramps, then weakness, then fatigue.

I was not coughing up blood. I have since and immediately went to the emergency room. I was there fifteen times in two years. Was admitted to the hospital all but twice, when the ER was able to identify and treat the problem.

[Aylasnan]

Thank you Birdie wow what a horrid disease! My pins and needles are very mild tingles. I do have very prominent blue veins in my arms.

[PattyL]

Yes our disease is awful I have pins and needles in my feet and ankles/legs also hands. They first came as shooting pains. Muscle cramps stopped but now are coming back, I also have weakness and fatigue is a major problem. Prednisone dose has just been lowered so I am hoping some of these symptoms will go away. I did not have these symptoms before prednisone.

[Pete]

Yes our disease is awful I have pins and needles in my feet and ankles/legs also hands. They first came as shooting pains. Muscle cramps stopped but now are coming back, I also have weakness and fatigue is a major problem. Prednisone dose has just been lowered so I am hoping some of these symptoms will go away. I did not have these symptoms before prednisone.

While you're on high dose pred, there are a couple of things you can do to reduce cramping. I took a 99 mg potassium tablet each day and I still eat at least one banana every day. Sometimes, I also drank tonic water for the quinine (my rheumy suggested it). I only use tonic water when absolutely necessary because of the sweetener (most brands use high fructose corn syrup or aspartame).