Newbie Help! Any of my weird symptoms sound familiar???

[Katybarstool]

Hi A

Yes I had lots of flushing when I first started taking it, but that wore off after a few weeks. On 10 mgs I got a lot of muscle problems, so I reduced to 5 mgs, and that seems to be helping. My feet still get very cold when I am sitting at work, but the circulation seems to improve if I have regular short walks.

My Raynauds manifests as white legs and feet from the knees down. Feet that feel so cold, they hurt. hey go bluish and then when they start to warm up they get very red, and the burning can be quite painful.

I didn't think my hands were affected until I was going on a coach trip in the winter. This entailed being out in the cold much longer than usual and my hands became very painful. When I took my gloves off my fingers were all white, while the rest of my hand was pink. As they warmed up, they turned red, and again, were pretty painful. Generally though, my hands are not much of a problem. I'm in the Uk and the temp is mid teens at the moment. I'm still waring wollen tight, socks and boots under my trousers for work. I dread to think how silly I will look in a few weeks, wearing summer clothes and fur boots

Hugs
Kathyx
The amitrtiptyline does help with the tingling/pain in my feet. I havve had that for about three years, and find tht 25 mgs works well. It also helps me sleep, which is no bad thing.

I do have arthritis in my feet, and very flat feet, which makes buying shoes a nightmare. If I try to wear shoes that are very enclosed, the underpart of my feet goes into a spasm. This certainly is a learning curve.

[Patze]

Hi Adrienne,

Let me also welcome you to the SJS World.  Please peruse the board as there are tons of topics that you might be interested in, and oodles of information too!  

Please remember that I'm not in the medical field, past, present (or future either ), but I also think that there might be several things going on at once and maybe your surgery brought it out, or menopause, or even stress, who knows - you know what I mean?  It's such a crap shoot sometimes that it can boggle the mind, it's no wonder that AI's drive doctors crazy (there is so much overlap with them). 

For me, I think that it was when I developed Hashimoto's that started my down hill slide.  I was doing pretty good until then, but when I look back, shoot, I'm doing better today then I did back then and I still don't know what my body is going to do next. 

I developed Reyanud's secondary and Livedo Reticulitis last year, and believe me, blue hands and feet are a bit different to look at.  I too have swollen toes and fingers when I'm warm (and they are that odd white), otherwise, they tend to stay blue and normal sized (sometimes different shades of blue/white and sometimes bright red when warmed quickly).

For the neurological pain, I take Lyrica, it seems to help the worst of it, and I can live with the rest.  I also take Flexeril for the muscle pain, it also helps me sleep a bit better.

Now if they could only do something with this darn tinnitus in both of my ears...it drive me bonkers some days!

Hang in there and keep us updated, okay?

Take care -

Patze

[Billydude]

Hi Avalanche.   I can't personally relate to your symtoms but keep in mind we all have such a wide variety of symptoms.
I just wanted to say hi and that I am an artist myself.   Or,  should I say I'm slowing down now and not relying on it for my income anymore as I'm on disability.
Steve

[jonnell]

Welcome A,  My daughter Jenna is 4 and has sjs if their is one thing Ive learned about this disease is that no two people have the same symtoms,  it affects eyeryone differently.  Im curious if they have tested your ana.  That might rule in or out a autoimmune disease.  That was the first tests Jenna had and that lead is to where we are today.  Hope you feel better   hugs and kissess   Jonnell and Jenna

[Scottietottie]

Hi Avalanche 

I just wanted to add my welcome as I can't really add to what others have said.

Take care - Scottie 

[lynnmarie219]

Hi A!

Just jumping in here late to add my welcome to you as well! I hope you get some answers soon so that you can feel better! Keep us posted on how you are doing!

[gurs]

Have you had all your hormones checked? I bet its related. I have had sjogrens for 30 years now (im 45) and everything changed when i went into
instant menopause from my hysterectomy 2 years ago. I have all your symptoms, plus a host of others. Ive had every test imaginable and have read alot
of books and email articles and alot of menopausal women have their bodies just flip out on them. Just an idea. I would def see a reputable rhemuatologist, as
well a doc who specializes in women's hormones. My rheumy is telling me that the menopause making my sjogrens/lupus/raynaud's nuts.

good luck to you.

[KJ]

Welcome Ava,

My symptoms developed rapidly as well, but I can look back see where things were a little off.   I am new to all of this as well, and still do not have a diagnosis. It sounds like you have good intuition, don't let anyone squash it!  I hope you get the wonderful care that you deserve.  How is the support from friends/family?

Big Hugs,
Kellie

[Avalanche]

Hi everyone-

Thanks for all the replies- I still don't have any real answers. or more importantly, help. I have gotten steadily worse. After my last post, I developed major fatigue, malaise, joint and muscle pain, horrible tinnitus and just feeling rotten. At night I go from burning night sweats to freezing. My feet have given me no relief. If they are hot, they are unbearable, and they sort of feel like plastic.  I have been to 10 doctors,(3 Rheumies, 2 GPs, 2 Neurologists, 2 orthopedists, vascular surgeon) and have gotten everything from FM to erythromayalgia, menopause, etc. I unfortunately keep suspecting Scleroderma, so I went to NYC's Hosp. for Special Surgery, and saw a doctor there who I know sees sclero patients, and is a co-investigator in the SCOT trials. He spent a whole hour with me, which I'm sure you can all appreciate is a rare thing. He took more blood and did a more sensitive test, which came up with a positive ANA (one plus, speckled). He still does not think I have sclero, but I obviously have some autoimmune process going on. He said that pattern is more indicative of SjS. My eyes do hurt occasionally, but I doubt I would meet all criteria just yet.  I last went to another doctor, referred by my GP, who now wants me to see yet another Dr. in N.J. for a detox and gluten free, or vegan diet. Yuck. I mean, is that really going to help? I never had any problem with eating anything before. Besides, I can get that off the internet, I don't have to pay $$ for that.

I am just so angry- I was perfectly healthy and great, even with my sciatica, and after the surgery, for 2 months- I thought I got my life back and was so happy. Now I am hardly ever happy, what's the point? I could deal with feeling awful if my feet weren't a constant state of agony- and no doctor has a clue as to what is going on or how to help- OR if I only had the foot thing, and not the other stuff. When I first had those inflamed toes, gee I never thought it would get to this, and of course I feel like it will get worse and will it stop?

Right now I am taking

Vitex (for hormones)
B12
Calcium-VitD-Magnesium
Atenolol (BP med)
Fish Oil 1000 (eneric coated)
Tylenol PM to help me sleep- I was taking Amitryptiline, but I found I was always chewing/biting my cheek

And to top it all off, I was up at Martha's Vineyard for a couple of days, and I was taking a shower and pulled a tick off my back! I have an appt in 2 weeks to see a dermatologist and get a punch biopsy- maybe that will help narrow things down.

Anyone got any ideas for relief?
Thanks, A

[gurs]

A,

Def sounds so much like me.......My symptoms started overnight. First with the burning/itchy feet, night sweats, and then the neuropathy all over my body.  Have you had your hormones checked? including thyroid?
I dont think the vitex will help much with hormone issues, you might need some estrogen in your body. I think you def have something autoimmune going on, aggravated by the hormone changes in your body.

[Avalanche]

Hi gurs

I think my thyroid is fine, I have had so much blood work done, my head is spinning. The Vitex did seem to help the flashes last year, before my back went out. I feel like aliens took my brain and put it in another broken body which I hate- I used to love being in my body, and really liked myself, but I hate what I've become. I just want to somehow get that back. I also have a weird thing going on with my skin- it dents really easily with anything (sheets, anything textured) and it stays that way for an hour sometimes. I saw people on the scleroderma site mention that, but I saw women on a menopause site say the same thing. So I either have a fatal disease, or it's natural!!??

I will definitely explore the hormonal component, maybe do bio-identicals- I meet with my GP tomorrow, maybe he can come up with a course of action. One thing I'm lucky in- I never seem to have a problem seeing good doctors right away- I was able to meet with the NY Rheumy, and right after that a neuro at NY Presbyterian. Too bad my case is stumping them all!

Thanks for all the ideas, or what the Hawaiians call mana'o!
A

[Wynter]

Hi Avalanche,

I am in the same boat as you, but all my tests register normal. I had a lip biopsy last year, which was normal, but won't have another. I went to Cleveland Clinic and they didn't tell me anything different except they think I have fibromylagia. I think that's a label the doctors put on something when they don't know what's wrong. Many years ago my dad got sick with Chronic Fatigue Syndrome after passing a kidney stone. At the time that was the "popular" diagnosis, now it's fibro. The rheumy at Cleveland Clinic actually told me that I needed to get "get my glands working again". Well, my glands haven't worked properly for 5 years and now they really don't work.

[gurs]

I have those skin dents all over too, like my body has run out of moisture. They stay for hours. I also noticed that my skin is just hanging, not firm anymore. My entire personality
has changed also. Its scary and sad. I know its the hormones..that is for sure. Are you losing any hair? My hair loss is so extreme right now.
Im still trying some new bio-hormones. I use a bio-estrogen cream right now, but im not absorbing it very well, my estrogen levels are still too low. I tried some other hormone patches, but they made me feel worse???

Best to try and find a doc who specializes in womens hormones. I saw a few different gyno's who didnt know much. I just started going to this new lady doc I found
who has been doing this for 20 years. Im hoping she can help. Good luck to you though.

[JJ]

Hello A,

   Was just wondering if you have been on any antibiotics....I hope you find answers soon

I do know the frustration of not knowing what when how or why and the aggravation of

nothing being done..so i will keep you in my prayers for answers and treatment. Just

thought i would throw this out here not sure if it has anything to do with what you are

experiencing but, i went on the patch to stop smoking and the vivid dreams i was having

were crazy real feeling. I also had another reaction that messed with my feet as well.

I'm not trying to get into your business just know some meds or treatments can cause

some similar reactions so I thought I'd just put it out for dismissal. I have Raynauds,

hypothyroid, RA, and SJS..along with blood pressure...I have to clean out the tub drain after

taking a shower just so the water will go down...so I also know about the hair falling out

stuff. It just keeps on coming, all the new and crazy things that happen. My skin dents are

from what i was told my blood pressure...i retain water...LOL...how can someone who

cannot produce enough moisture in her mouth and eyes retain water...Take your finger and

press down on your arm just up from your wrist where its more meaty then see how long

that yellowish white finger print stays in view....that is how they said they could tell. Well

since i am probably of no help I'll close..but i really do hope that you get answers and relief.

JJ

[Avalanche]

Thanks All

Let's see.. No, I am not losing hair on my head, I have very thick hair, and it still seems pretty normal everywhere else. Maybe the leg hair is growing slower. I just got back from the GP. He is testing (again) for Lyme, and hormone levels. He also gave me another antidepressant to help me sleep better (Mirtazapine). But the worst is my poor feet!!!
I walked back from the Dr.s which is maybe half a mile (of course I have to wear sandals, socks and sneakers are too uncomfortable)- while I'm walking it's not so bad, but when I got into the house where it is warm, they swell up, turn red and are unbearable, I just want to throw and smash things. I told the Doc it's like trying to do a job while bees are stinging your neck continuously... When this first started with the feet back in Jan. the only med I was on (well, the only one I was ever on) was the Atenolol for BP, plus I never smoked a day in my life. So anyone else get the hot toe thing?

I am just so blue about my existence- Tomorrow is my birthday, this will be the first time in my life that I won't enjoy it. And that makes me even more ticked off...
A