..........Raynauds & Vertigo

[Guest guest]

Hi ,

Welcome to the group. You will find support and friendly people on this mailing list. I am a lurker and can't keep up with the daily e-mails but I scan them on weekends. Most people with RP have one or more other autoimmune problems working at the same time. It can be confusing to many physicians. Usually my rheumatologist, my cardiologist or my ENT docs does better with connecting the dots.

I was initially diagnosed with Raynauds in 96 along with the RP in 98 after having a blood clot in my leg along with scleritis. The primary doctor sent me off to 4 specialists when the blood clot appeared. I had been complaining about my feet and ankles for 6 months. The blood specialist & cardio docs were specific on what to do so you have no nerve damage with Raynauds. Keep youself warm and exercise. Not running or strenous exercise but keep moving. I went to the mall at first and walked inside and then joined a yoga group twice a week. Yes my feet killed but i was worried about nerve damage so kept going. Yoga sounds corny but it relaxed me and lifted my spirits. Everyone else in the class has their share of medical problems and are in the class for health reasons. The docs can give you a vasodilator med if your feet/hands/ears are in danger of permanent artery damage.

My Raynauds worsens with the changing seasons and air conditioning. Here in NH I wear long underwear (tops & bottoms from Oct 1st - June 1st.) I get the silky kind for fall/spring and the heavier for winter. Layering is the key. I always have long blazers and long sweaters which I can peel off if I get warm enough. I also bought those white silk socks (skiers wear them under their socks) which say they keep you warm and they do. You can find them in sports stores. I wear this long LL Bean down coat that comes right to my ankles and the heavy duty mittens and hats. It worries me that the doctor isn't suggesting you wear your shoes looser. They told me not to wear tight shoes which would bring on more pain. I bought the name brand e clogs which allow me to slip my feet out when they ache and wiggle them more. Plus there is room for wool socks or double socks. When my feet are swollen -- I raise the end of mybed. My husband put wood blocks under the bed legs and it really helps. When you get up in the morning the burning sensation is gone.

I have been experiencing vertigo just this summer. The docs think it is fluid in the inner ear. The outside ear has sores on them but not as bad as other times. They ruled out infections and I am taking another hearing test this Wed. I know one of my eustachian tubes has collapsed but I never had this vertigo before.

He gave me a prescription for Antivert which helps but I just want to get my balance back. Are you seeing an ENT to pinpoint the vertigo problem??

I have no experience with facial nerve pain but sounds like the RP. It is possible in time to get all of these symptoms under control with good communication between you and the doctor (s). I only scan the RPolychondritis e-mails lately. So I am not sure which doctors are treating you. But complain to you primary doctor about your feet. It wouldn't hurt to see a vascular doc or foot doctor to identify any other medical problems affecting your feet.

Hope this info helps and you can get some pain relief soon.

Take care,

Cheryl L. (Litchfield, NH)