new with questions

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New Member

Date Joined Apr 2010
Total Posts : 7
   Posted 4/11/2010 6:57 PM (GMT -7)   
Hi, I am new to here, but have read through the forum many times. Got great advice so decided to finally join up. I have a few new things going on now and not sure if they relate to Fibro. I am affected more on one side than the other on some days. Lately, I am waking to ice cold hands and arms, but more on the right side. Also, I have been through the sleep studies, but was not diagnosed with RLS, but for awhile now I have noticed the creepy crawler feeling and restless feeling in my legs especially when I miss my afternoon dose of meds. I have had surgery on both feet and my nerves have never repaired, so I am wondering if anyone can shed some light on this for me.

Diagnosis: Fibromyalgia, Chronic Headaches, Nerve damage in both feet, IBS, Gerd, Depression, Binge Eating Disorder, Adema and Asthma

Medicines: Savella, Neurontin, Ibuprofen 800mg, Darvocet, Advair and Trazodone
Vitamins: Potassium, Vitamin D-3, Vitamin E, Biotin, Omega 3

Veteran Member

Date Joined Jan 2005
Total Posts : 9090
   Posted 4/11/2010 10:44 PM (GMT -7)   
Hi Sleepybear!!

Glad you decided to join the Family! As you most likely know, fibro symptoms are so darn hard to pinpoint because they not only move around but change in type and intensity. It can be frustrating because we feel something new or different and want to dismiss it to fibro. But then again it might just be something that our doctor should check out. I would always err on the side of asking the doc about it, if it were me. Unless it's extremely disturbing then I wait until my next appointment but I go in every 4 weeks so I don't have much time to wait.

Those creepy crawler feelings must be awful! Does something like warmth help your legs settle down? What about giving your own legs a short, gentle massage or maybe a spouse/friend/whatever you have helping Does the weight of the covers bother you? Sometimes I have problems there when my left food hurts. Even the very soft sheets I use hurt my skin at times.

I also have some afternoon medicines and if I forget them I can really end up feeling miserable. That's when I finally Plus I can go from icy cold to overly warm and sweating in a short time and without even trying. I've checked out other reasons so I'm going to blame that one on fibro too.

I would guess most of what you are describing is related to fibro and maybe the nerve damage? Just my opinion on that one. I sure hope you can get some help with the discomfort and changing symptoms. It's bad enough we have the pain but the worry seems to intensify the pain and bring on more problems. When in doubt give your doc a call or maybe just talk to his nurse and ask their opinion. Maybe you can get an answer that will help you not worry about it. Also, some insurance companies or hospitals have a free hot-line where you can call a nurse and ask questions.

Hope something in this helps!
Gravitation is not responsible for people falling in love.
Albert Einstein

(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.

getting by
Forum Moderator

Date Joined Sep 2007
Total Posts : 41902
   Posted 4/12/2010 5:39 AM (GMT -7)   
Hi Sleepybear,

I too would like to welcome you to the forum. I am so glad that you have joined us. You will like it here.

If you get a chance, check out the thread called fibro101. It is the second thread on the forum. There is a ton of information there to read about. I think you will find it very interesting.

I hope that you are having a good day today. Let us know. Fibro is a hard disorder. As Chutzie said, the pain can move around and you wonder what the heck is going on.

I have gotten my symptoms under control with medications and counseling. It gives me a different way to look at things. I hope that you can gain some ground with this too.

Please keep posting.

Hugs, Karen
  Moderator-Depression and fibromyalgia
fibromyalgia, Chronic fatigue, depression,allergies

Forum Moderator

Date Joined Apr 2005
Total Posts : 17523
   Posted 4/12/2010 10:12 AM (GMT -7)   
Hi, sleepybear, and welcome!  I'm so glad you decided to join our fibro family.  I was a lurker, too, before I joined in.  Yes, we do have a good forum.  We have wonderful members who love to help one another and we really do care about each other, too.  I think you will like it here.
I see that Karen directed you to the Fibro 101 thread.  There is a link to symptoms and you will find a lot of what you are dealing with there.  You are not alone.  Right now, my fingers are like little ice cubes.  I live in Florida and I have the door open right now because it's sunny and 82 degrees outside but my hands are like feet too.  But, that can change in a heartbeat.  I spend half the night putting on covers and then taking them off....over and over again.
Many doctors that are studying this illness are starting to lean towards this being a neurological problem.  That could explain the nerve problems you are having and why our perception of pain is great!  If someone playfully swats my arm, it hurts sooo badly and I swear I'll be getting a bruise, but I never do.  But, I can bruise easily if I bump into a wall or something like that. 
I'm so happy that you are here.  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from you soon.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Regular Member

Date Joined May 2009
Total Posts : 241
   Posted 4/12/2010 11:49 AM (GMT -7)   
Hi Sleepybear, welcome to the forum! Make sure you mention to your doctor about your cold hands when you wake up and just make sure it is not a circulation problem. What type of surgery did you have on your feet?

I also get RLS if I do not take my pain medicine (ultracet), it is the worst. I find if I get up and walk around it can help, otherwise I take my pain medicine and wait till it kicks in before I try to lie down again!

Glad you joined us.
Fibro dx 2004, RLS, raynauds
Ultracet, Robaxin, Neurontin, Lidoderm patch, Vit D, CoQ10, Mag

Regular Member

Date Joined Apr 2010
Total Posts : 71
   Posted 4/12/2010 12:24 PM (GMT -7)   
The creepy-crawlies were my first clue that the pain and other peculiar sensations I'd been having were due to fibro.  My sister has had it for 14 years, and I remembered her talking about it.  I take Flexeril and trazodone at bedtime, and that seems to keep the creepy-crawlies at bay.  I sometimes still have them during the day if I stand in one position too long.

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 4/12/2010 12:54 PM (GMT -7)   
Hi Sleepybear and Happycat and welcome to the family. Sometimes I think fibro is about the weirdest disorder there is out there. Just trying to figure out what is cause what is enough to drive you crazy or for some of us crazier. smilewinkgrin I do have more problems with my left shoulder than my right shoulder for some reason and one would think since I am right handed it would be the other way around.
If I have something come up that I think could be serious I will call the doc but if it is a new pain in an area that doesn't appear serious I will write it down and run it by my doc when I go in. I go every three months. There have been times when I will have a pain and never have it again so I don't worry too much about those.
Every once in awhile I will have the creepy crawlies in my legs but not often. My biggest problem with my feet is when I sit down for the day about this time everyday if I move my feet I get cramps in the bottoms that will make my toes contract in weird positions that hurt and I have to wait it out til the muscles release.
So far today I have had the heat on and the air on. It is 77 degrees out and I'm sitting here with my little heater on me, how crazy is that. But 10 minutes from now I may have the air back on. It seems rare for me to be comfy with the temp it is in the house.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
Vit D/calcium

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