oodles of symptoms and hair loss/tender scalp/ETC!

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Regular Member

Date Joined Mar 2014
Total Posts : 357
   Posted 5/16/2014 11:06 AM (GMT -6)   
Hello All--

For the last month or so, I’ve been having awful temporal headaches, at times, like an ice pick is stabbing the left side of my head. I’ve also had very bothersome ear ringing for quite a few months, as well as a nagging dry cough. Dry mouth, too, and I drink over 70 ounces of water/club soda per day.

My toes have been angry for the last five months, with six of them a deep red/purple color and painful. The ends of those toes have become hardened with scaly skin. Now, the bottoms of my feet are red and yellow. (A few of my toes had become red in the past couple of years, but it always went away—but this has been continuous for five months now.)

The most prominent thing to me in the last month or so is the amount of hair I’ve lost, noticeably lost. And having to do with my head area, it’s been difficult to hold my blow dryer and round brush above my head since 2009. Yesterday, that took on a new feeling—along with the pain and muscle weakness, both my arms went numb and tingly.

Also, my scalp has been very tender lately, of which I’ve experienced infrequent symptoms in the past couple of years.

My vision has changed, too, pretty recently. Instead of keeping reading glasses in every room :), I now wear regular glasses.

Other symptoms include:

very painful neck, since 2009 (I had a fusion in 2005, but an MRI 1.5 years ago showed no problems.)
knee pains, even with my knee replacement
ankle pain at times, as well as foot pains, and definitely shoulders
had a cortisone shot in my right shoulder two years ago—that helped bursitis
fingers stiff at times
within the last week, feet and then legs became numb and tingly during a 6.5 hour car ride
fatique—and hard to make myself get out of bed!
speech difficulties—jumbly or can’t think of my words or say the wrong thing
dizziness sometimes
problems with memory—mostly short-term
facial hyper-hypopigmentation, splotchy skin, and what I consider to be a malar rash ( Someone asked if I had been in a tanning bed . . . HA)
major photosensitivity, but I’m determined to continue my walks, albeit shortened ones, wearing serious sunglasses, long sleeves, and sunscreen (have some shortness of breath when I get started)
chronic constipation—laxatives don’t even do the trick most of the time. Also have sharp pains where my ovaries would be if I had them—it’s a fleeting pain, but catches me off-guard.)

This past fall, I went into a wild depression. Paranoia, anger, bad thoughts, you name it. Cymbalta has truly helped me stay on an even keel! (My husband does not understand depression at all (which is probably typical for a lot of people), but he’s been so, so patient with all of my other issues.)
In my youth, I had one period at 16 and one at 17, and, at 18, had surgery for polycystic ovaries, and had cysts removed. Put on birth control pills then to regulate.

Have had Raynaud’s, probably since my 20s. Funny, how you can look back and see situations adding up, but have no idea at the time.

Additionally, my mother passed away from lupus complications when she was 53. I’m 61—and have seen two rheumatologists who scoffed at me, saying I was too old for lupus. (That was when I was 53.)

My anti U1 RNP is elevated, and scleroderma shows up a bit. No titer reading yet. Elevated lymphocytes and low WBC. My primary says MCTD/mild lupus. I see a rheumatologist on May 28, in Billings, MT. (I live in Wyoming.)

Many thanks if you’ve chosen to stay with my long post. (It’s good that I’ve probably forgotten some things!) ;)

Any thoughts from the wonderful peeps on this forum are much appreciated!

Oh! I’m getting my hair cut short tomorrow . . . :)

"If there are no dogs in Heaven, then when I die I want to go where they went."
Will Rogers

Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 5/16/2014 1:42 PM (GMT -6)   
Wow, sounds like you have quite a lot to share with a rheumotologist. Do you take any meds besides Cymbalta?

There is a long post in the "Lupus Resources" thread (1st in the list) which gives many suggestions on the first Drs visit - check it out!

Hope they can come up with something to help you out soon.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 5/16/2014 2:17 PM (GMT -6)   
The tender scalp is familar to me. I'm plagued with tiny festered bumps all over my scalp. I haven't used a hair dryer and brush together on my hair for several years now. Most of the time I run a comb through my hair and let it air dry.

Best of luck in your visit.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Regular Member

Date Joined Mar 2014
Total Posts : 357
   Posted 5/16/2014 5:34 PM (GMT -6)   
Thank you, Lynnwood. It was good to re-read the lupus resources info again! I'm beginning to compile a (neatly typed) list of everything I've been scribbling down in my notepad and on my calendar. :)

I used to be into all kinds of herb and vitamin supplements, but have been negligent in doing so for a while. (probably because we have to do that type of ordering online, since we live in a small town)

In addition to Cymbalta, I take 200 mg of Trazodone about 30 minutes before sleepy time, as well as a couple of Hydrocodone a day--either a 325 or 500 mg tablet, or half the 500 tab. I also take a generic acid reducer, since the Hydro makes me kinda yucky. For my headaches, I take Ibuprofen gel caps.

I had begun taking turmeric for inflammation, a really good probiotic, and a multi-vitamin, but I've stopped those this past week so that when the rheumatologist does testing, there isn't an outside influence. (maybe that's silly)

I have found that besides stabilizing my moods, Cymbalta has helped my back pain so that it's more tolerable--and it helped my neck for a bit, but that pain is back in full force now.

(Oh, I also get UTI's very OFTEN. So, my husband and I are in a "no intimacy mode" so that there aren't any antibiotics to disrupt a test either.) TMI . . .

It sounds like Plaquenil is quite helpful as an all-around "pick me up." I'm hoping that the rheumatologist will at least prescribe that until he (hopefully) comes up with something concrete.


Joy, I hear ya! Putting a brush through my hair is pretty painful, too! I'm looking forward to my haircut tomorrow . . . short, short hair will be much easier to deal with.


I am sincerely appreciative for the well wishes from both of you! I'll keep in touch.

"If there are no dogs in Heaven, then when I die I want to go where they went."
Will Rogers

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 5/16/2014 11:17 PM (GMT -6)   
Try cranberry extract pills daily for the UTIs. I haven't had one since I started taking them.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 5/17/2014 12:44 AM (GMT -6)   

Like Lynnwood said you've got a lot to discuss with the Rheumy when you see them. I know that you mentioned the Cymbalta is helping your pain. It does do that I take it too, mine was given to me by my primary care Doctor. It's used often in Fibro patients to help with their fibro pain. So it's a really good thing to take when you have fibro.

I hope that the Rheumy begins to treat your symptoms. It may take him a bit of time to fully figure out everything. As long as he's treating your symptoms that's all that matter. I don't know if anyone has mentioned it but Plaquenil it can take up to 6 months, before it's in full affect. Most folks do start to see help within the first few weeks though. It also can cause some tummy upset and some folks need the name brand vs the generic.

Also, if he starts you on it make sure you see the eye Doctor for an exam. Plaquenil can affect our eyes, but it's VERY, VERY RARE for it to do that. They do worry about toxicity with the drug. I've been taking this drug and prednisone for 14 years as of June 1st, 2014. So far, the only thing that's hurt me has been the steroids. I have SEVERE osteoporosis and have 15 rib fractures that are currently in different x-rays and scans show how and where they've been broken.

I hope that once you see the Rheumy and he starts you on something you'll begin to start feeling much better. Hang in there Jan it's a pain in the rear end I know and it's discouraging and depressing but I know once they get you on the correct medications you'll feel better.

DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Regular Member

Date Joined Jan 2014
Total Posts : 360
   Posted 5/18/2014 6:36 AM (GMT -6)   
Hey Jan, I'll be thinking of you on the 28th!

Hopefully this new rheumy will be more attentive to your symptoms.

How's the new "do"? I got my hair chopped a couple of months ago to a chin length bob. It was very long before but really thinning out. It boosted my spirits to get a new look, refreshing in a way.

I get all kinds of sores on my head too. I've been waiting for some to heal before I can dye it again. My grey is getting very noticeable and I don't like it!!!! I refuse to give up my hair dye lol. I've already given up eye makeup because it irritates my eyes so much. I'm vain. What can I say?!

Best of luck at your appointment!!

Regular Member

Date Joined Mar 2014
Total Posts : 357
   Posted 5/18/2014 11:56 AM (GMT -6)   
Dear Joy, Barbara, and Joie--

Joy, I will definitely get some cranberry extract--thank you! The prescription meds make me nauseous. ugh

Barbara, I appreciate your words of wisdom! They are very helpful. I'm already having problems with my vision. Just got my first pair of glasses last week, and I like them! ;)

Joie, you and I both have appointments, pretty much back to back--so I'll definitely be thinking of you as well!

Hooray for a haircut that is "refreshing" to you! I know exactly what you mean. My hair was between chin and jaw length. I went for an Annie Lennox look--when she had hers at about its shortest as a platinum blonde. I followed her color, too. We could definitely pass for sisters. Now, if only I had her singing voice. :) I went much lighter than my normal highlights, and that seems to kinda "disguise" the missing hair--making it not as noticeable. What an easy "do"--wish I would've done it sooner. AND, I love it with my new glasses. ;) SO, both you and I had "pick me up" moments with our hairdressers!

Oh, I had a couple of sores on my head that had been there for years, but a couple of weeks ago, the tops of them peeled off, but I can still feel where they were.

Back to my hairdresser . . . she gave me the most gentle, wonderful head massage while I was in the shampoo bowl, and was very careful with my tender, tender scalp. I might have fallen asleep if my darned neck didn't hurt so much in that shampoo position. ha (Oh, and I also got some new lipstick/gloss to top off my new look.)

I hope everyone is having a beautiful Sunday and enjoying the day with something or someone that/who makes you feel good.

Thanks so much for writing.

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