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New Member

Date Joined Feb 2008
Total Posts : 6
   Posted 2/5/2008 12:55 AM (GMT -6)   
Hi everyone, this is my first posting. I have been reading the posts and thank you for your help even though you did not know I was asking.   I was dx with lupus in april 07. I have had bouts of vasculitis on my legs and I have very swollen ankles with burning and pain. But the worst is the rollercoaster of exhaustion almost daily. This forum has been a godsend already.  You all seem like dear sweet souls.  I am looking forward to learning and growing with you.  Thank You Lucylynn


Edit:  Lucy, the only thing I edited in your post was that I just added a subject so that more people might see it and respond to it.

Post Edited By Moderator (hippimom2) : 2/5/2008 12:14:40 PM (GMT-7)

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 2/5/2008 6:56 AM (GMT -6)   
Welcome to the forum Lucylynn!!

YES! The fatigue is the worst!! I feel for you Lucylynn . . . I had a two-year period where I just could not shake that fatigue.

Make sure you tell your doctors EVERY visit exactly what you are experiencing. Make sure you know the difference between: weak, tired, fatigue

weak: you aren't strong enough to do certain things . . . climb steps, reach above your head, open a jar, etc.

tired: you feel sleepy, could nap any time, etc.

fatigue: you feel like you are walking around in a weighted suit . . everything is an effort

The way we describe our issues to our doc is very important. I write mine in a list and hand the doc a copy, while I hold another copy.

Glad you finally decided to post!!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Forum Moderator

Date Joined Jun 2006
Total Posts : 1531
   Posted 2/5/2008 8:11 AM (GMT -6)   
Hi LucyLynn.  I'm glad you decided to stop lurking and join our forum.  Anytime you need to vent or a shoulder to cry on, we're here.  Lupus brings "exhasution" to a whole new level, doesn't it?  I'm sorry about your vaculitis.  I'm sending prayers and lots of positive energy your way LucyLynn!  Love, Butterflake

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: CellCept plaquenil methotrexate prednisone prozac celebrex lisinopril actos lipitor nexeum seroquel arthritis tylenol multi vitamin C calcium/D flaxseed oil  PRN: ambien neurontin promethazine xanax
             Better living through chemistry :D    Donna

New Member

Date Joined Feb 2008
Total Posts : 6
   Posted 2/5/2008 11:48 AM (GMT -6)   
Thank you for the warm welcome to the forum, kinda feels like coming home. I just got home from my rheumy visit. I did not get to see the rheumy, I got to see the PA which is fine with me cause I like him better. After putting me almost thru the ceiling pushing trigger points, Fibromyagia has been an added Dx. I knew I had tender sore areas, I just didn't know how bad! A new med added was Zanaflex for muscle spasms and cramps. Hopefully that will allow better rest at night and then help with the tiredness. I have done some research tryin to find any nutrition suggestions that might have a positive effect. Thus far no luck. Anyone have any information to share about that. I would greatly appreciate it. Love and Light to you all! LucyLynn
Mamaw Lucy SLE april 07, migraines, vasculitis                   Plaquenil,  metoprolol,  evista, prevacid, diuretic, ambien, lotrel, 500mg calcium plus vit D 2xs a day

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 2/5/2008 2:11 PM (GMT -6)   
Hi Lucy and welcome. I'm sorry about the added diagnosis - I really hope the zanaflex helps with some of the soreness and with your sleep. Getting good restorative sleep is so important for our bodies when dealing with a chronic illness.

As far as nutrition goes, I have read that it is best for us to follow a well balanced healthy diet. Some of us have some sensitivities to certain foods. For me, I don't do well with processed foods or foods with artificial sweetners. Anytime I've had artificial sweetners, they make me feel physically sick. I have also read that some people with lupus should avoid nightshade plants.

I'm really glad you joined us. We have a great group of very supportive people here. I look forward to hearing more from you
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 2/5/2008 4:25 PM (GMT -6)   
Welcome Lucylynn,
I'm sorry you have this diagnosis.  It's good that you're here.  YOu'll learn a lot and we'll learn from you!
I have vasculitis also.  I always know I'm in a little flare up when I have splinter hemorrahges in my fingernails. (little brown lines on the nails).  Do you get those?  Do you have any other skin involvement with your vasculitis?  I also have Livido Reticularis.  Purple, lace-like marks on my wrist and ankle. 
I look forward to getting to know you too!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 2/5/2008 7:15 PM (GMT -6)   
Ho Lucylynn, I thought I saw you lurking around LOL. Just kidding. But yes there is ton's of info to be found here. There is even a fibro setion here you might find help with. The lupus sight is my home but I have gone to a few of the other groups and they our all very helpful. These folks are somone the nicest you'll ever know. I think because we can all relate to each other and it's important because so many others who aren't suffering from a chronic illness just don't get it. It's not their fault but find this group was the best thing that ever happened to me.
Oh yeah I got the vasculitis too but my is on my back. very lovly with a low back dress let m tell ya!

well anyway welcome again glad your aborad!
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4. 
I will never leave you nor forsake you!

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 2/5/2008 10:04 PM (GMT -6)   
Hi Lucylynn, welcome to the group! The fatigue was one of the hardest things for me to deal with too but Plaquenil helped right away. I still have fatigue but nothing like before starting the med. How long have you been on Plaq and what's your dose? Take care and keep us updated on how you are doing!

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)

Audrey Ann
Veteran Member

Date Joined Jul 2005
Total Posts : 815
   Posted 2/5/2008 10:41 PM (GMT -6)   
Hi Lucylynn!

So happy to see you have joined us - the more the merrier! Just wish we didn't have this crazy disease to cause us to get together but I have very blessed by my many friends here at HW! You are absolutely correct about the fatigue, too. That is one symptom that is almost impossible to describe to someone who does not have lupus. I still cannot get over how debilitating the fatigue can be for us.

My prayers to you and, again, welcome!
Audrey Ann
Lupus and RA and LOTS of Medications!


Veteran Member

Date Joined Apr 2005
Total Posts : 1529
   Posted 2/6/2008 12:15 AM (GMT -6)   
Welcome Lucylynn,

I'm glad you felt ready to post. I was a lurker before I posted for the first time also. I wish none of us even needed a place to post, but since we do I'm glad I found this forum. I have gotten lots of information and understanding here. I hope your vasculitis flare settles soon. As everyone else has said, the fatigue is like nothing we never experienced when we were "healthy".

Hope to see you posting whenever you have questions or need understanding.


PS I didn't know that livedo reticularis was a form of vasculitis.
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia

Regular Member

Date Joined Sep 2007
Total Posts : 151
   Posted 2/6/2008 9:46 AM (GMT -6)   
Lucylynn, I too would like to extend my welcome! SO WELCOME!!

Regular Member

Date Joined May 2003
Total Posts : 56
   Posted 2/6/2008 10:24 AM (GMT -6)   
Hi Lucylynn and welcome! I'm sure you will find comfort and helpful suggestions with all the wonderful people here. I also have debilitating exhaustion. The only way I have found to deal with it is more rest. I did ask my rheumy for a handicapped placard years ago, and that helps when I'm feeling up to a quick trip out of the house. I'm sure your rheumy would sign for it, if you don't already have one, especially with your sore and swollen ankles. I'm glad you decided to join us and look forward to your posts.

New Member

Date Joined Feb 2008
Total Posts : 6
   Posted 2/6/2008 11:52 AM (GMT -6)   
HEY everybody, Thank you for such an overwhelming response and welcome. It feels good! jhmom, I have been on Plaq since sept 07 400mgs once a day. I really think it is helping just not fast enough HA I want results yesterday just like we all do. Ginny, I have not had vasculitis anywhere but on my legs from knees to ankles. there was also some vasculitis showed up on a brain MRI, but no problems there yet. The Plaq has stopped the vasculitis flares in my legs so far. Ginny what is Livido Reticularis? I am not familiar with that. Okie, do you keep vasculitis or does it come in flares? Does it have a burning sensation that feels raw and tender to touch? And honey you wear that low back dress if you want to. I wear crop pants and bermuda shorts with my breakouts, I don't care. I figure if I am dressed and out and about I must be feeling pretty good and people seeing my red blotchy skin is not a problem. Hi Harmony, my husband already has a disabled tag so I get to take advantage of that and it does help a lot. He does most of the driving anyway. I feel kinda guilty when I take those parking spaces because I know there is always somebody worse than me that might need it. I still have legs, not very pretty ones mind you but I still got em and I can walk,Thank God! Hippiemom2 thanks for nutrition info. I can't use artificial sweeteners either, they cause migraines and makes joints even more stiff. You mentioned nightshade plants, are they like potatoes, tomatoes, peppers, eggplant? My goodness potatoes and tomatoes are my favorites but I think I could give them up to feel better. Thank you emmi, my vasculitis has subsided, thanks to plaquenil. Audrey and KaAl thank you for your welcome, Everyone of you are Great! I'M feeling the love here! LOVE and LIGHT to you all, Lucylynn
 SLE april 07, migraines, vasculitis , fibromyalgia     Plaquenil,  metoprolol,  evista, prevacid, diuretic, ambien, lotrel, Zanaflex, 500mg calcium plus vit D 2xs a day

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 2/6/2008 2:27 PM (GMT -6)   

Hi Lucy,

   Welcome to the forum! I'm glad you decided to join us. Here's the defination of Rivedo Ritcularis:

  "a persistent purplish network-patterned discoloration of the skin caused by dilation of capillaries and venules due to stasis or changes in underlying blood vessels including hyalinization; rarely appears as a developmental defect."

  I have this on my ankles right now. It's reddish/purplish dots with some swelling. Mine gets itchy sometimes.
  I take zanaflex for Fibro too. It works pretty well for me. Sometimes I have to increase the dose when I'm flaring bad. I can take 2 four times a day per my rheumy. I usually just take one at night when I'm not flaring.
  As far as the diet. I find if I eat more fruits, veggies and fish, I feel better. I love the night shade foods too, so thats hard for me to give up. Baked sweet potatoes don't seem to be as bad and the white ones and are very tasty.
  Well you take care and I hope you feel better soon. Keep us updated and as you have already seen, this group is wonderful! You will be in my thoughts and prayers.
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Regular Member

Date Joined Oct 2007
Total Posts : 100
   Posted 2/7/2008 9:48 PM (GMT -6)   
Sorry - a little late - but WELCOME! And, just as everyone else: Glad you are here - but sorry you have to be.

I've not been on here for a few days - so getting caught up.

And, as everyone else...the fatigue is the worst part for me. I've just had to make it a point to get at least 8 hours of sleep at night. And, I sleep in on Saturday mornings. Sunday afternoons, I usually nap for a couple hours. It's frustrating...but you have to do what you have to do.

I see you were diagnosed about three months before I was. And, we have migraines in common. I have a sulpha allergy - so I can't take migraine meds..and that sucks canal water! lol The doc uses Keppra (anti-seizure med) to help me get rid of them.

Anyway - welcome again!

SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil,  10 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil, lybrel

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