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Sjogrens Topics => Living With Sjogren's => Topic started by: Avalanche on April 06, 2009, 12:46:11 PM

Title: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Avalanche on April 06, 2009, 12:46:11 PM
Hi all-
I have been looking at this site for a while, trying to come up with any answer as to my problem. It's a long (but short in time span) saga, so bear
with me.

Just 8 months ago, life was great- I spent 3 weeks in Hawaii where I had a show of my paintings- I was in great shape (I'm a 52 yr old woman), and
in good health, so relaxed. Then in August, I was working on a house I have in upstate NY, and wound up with a sore back. That turned into sciatica that lasted
for 2 months. I was getting some numbness and weakness in my right foot, so I had surgery at the end of October to take off 10% of the disc that was sitting on
the nerve. I had a really good surgeon, and there were no complications. I had some numbness still, but the surgeon says it takes 1 yr for the nerve to heal.

I felt pretty good after the surgery, and started PT. Then one day I had some painful redness and swelling on my middle, ring and pinky toes, and a few days later, a toe on the other foot
did the same thing. It was really cold at that time. I went to my GP who said he thought it looked like Raynaud's, and sent me to a Rheumy. She said she believed it was primary
Raynaud's (even after the 2nd visit, when I know had it in my hands, and my whole feet) . She did a nail fold capillary test (for scleroderma), and she told me all the bloodwork was normal.
She repeated the nail fold test a month later, still was normal.

The problem is, it doesn't fit into primary Raynaud's behavior. First of all, my toes have changed shape, they are fatter and never go back to normal (I can't even remember what that is), and they
react more to heat than to cold. They sting in the shower and turn dark, and bluish, but they will go to a more normal color when cool. They are also numb and I can't bear sock and sneakers, flip flops are the most comfy. Even after the surgery, I could walk over a mile easy, but now when I stop (walking itself is ok) my feet will buzz and burn like prickly heat.
They hurt in the am., and I hate getting out of
I never had the classic white finger syndrome- they seem to react more to pressure, but when it was hot the other day they turned red. My feet were unbearable when they got hot.
If I walk around, or put my feet up, they go back to a more normal color, but sitting down they get a dusky blue color. I went to a vascular surgeon, my circulation is fine.

The reason I'm posting here, is I just know there is something wrong with me other than that- First I had (and still have) bad dreams every night, where I just know something is wrong with me,
then I would get icy prickles in various spots- and my stomach was in knots, I had no appetite. Then I would get this dry gulping swallowing in bed, and I have felt like my eyes have been dry for
a week or so, and I am never relaxed any more in bed, my hands or feet will hurt if I put pressure on them, and my knees will hurt if I bend them. I also feel sensitive to sun and noise, and I do
seem to have hissing in my head/ears. Could this be ss, and can it come on that quickly?

I am so depressed, I feel horrible every day, although it's not really fatigue- I just don't feel myself. I would be able to function if I could figure out what my feet are doing..
Sorry this is so long, but anyone have any ideas, or does this sound familiar?
A


Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: harrigan on April 06, 2009, 01:20:23 PM
Avalanche, that sounds  like a lot of pain and worry for you.  I'm sure other members with more experience will come along and answer your queries, I just wanted to say welcome and hope some of what you read on here is a comfort and a help.  I know exactly how you feel with the pain in bed, but have been better since I started on amatriptyline. 

Could you go back to your GP and ask for a referral to a rheumatology clinic, given that your aches and pains are accompanied with sore eyes too?  You really do need a dr who will listen and act on your symptoms, regardless of what your bloodwork says.  Hope things start to move on for you quickly.  I'm 49 and until a year ago I was fit and healthy and hadn't been at a dr for years, so I share your frustration at all this.  Good luck, post often and let us know how you get on, xx Ailsa

Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Nathan on April 06, 2009, 02:33:08 PM
Have you noticed any skin changes? Darkening skin, weird rashes, splotches, whiter nails or anything to that degree?
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Linda196 on April 06, 2009, 02:38:04 PM
Hello and welcome, Avalanche.

While your symptoms don't sound like typical SjS (whatever that may be, since it's so individual) it definitely sounds like something that needs to be investigated, diagnoses and treated. I second the suggestion to ask for a referral to a rheumatology clinic, and start getting to the bottom of this.

Many autoimmune diseases are triggered by surgery or trauma, so these symptoms could be a flare of something that's been lurking for a while, just waiting for something to light the fuse.
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Avalanche on April 06, 2009, 03:58:23 PM
Hi all-

Skin changes? I feel like I'm in a different body! My hands look different, but they are not puffy, I kind of can't tell, I never looked at them so closely before. But I don't think the skin is thicker than before. I feel like I'm pinker, except for my feet which seem to be redder and it looks sometimes like a splotchy heat rash (though not raised). I do have an odd spot on my shin, but it might have been there before. Nails look the same, and as I said, nail fold tests were normal.
I will try to see my Rheumy again this week- she was recommended by someone on these boards, I know she has ss patients. I also have an appt to see another guy who's been practicing for 28 yrs, so maybe he'll have a clue.

I am so afraid I opened a Pandora's Box with the surgery- the surgeon was happy with me in the post-visit, telling me "You're going to do great", and the second visit told me to give my body time to heal- but this is beyond his control I think.

Anyone have good remedies for buzzing, tingling feet that are not as severe as Neurontin or something like that? I'm not sure I'm ready for that..
In the meantime, thanks for all ideas!
A
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: KYMOM on April 06, 2009, 04:48:26 PM
Avalanche, I also have problems with my feet and heels buzzing and tingling.  I used to walk 4 to 5 miles several times a week.  Now I can do 2 miles several times a week.  I find that when I get home if I put my feet on ice packs for 20 to 30 minutes it helps.  Also, I cannot lie in bed at night and watch TV.  My heels buzz so bad that I can't stand it.  I now sit in a reclining chair in my room at night to read or watch TV and my heels do not touch anything so without the pressure I do better.  On nights where I have done more walking, I take two Alieve before bed and that helps.  I have slept for years with a body pillow on my side so there is little or no pressure on my heels.  I did not realize until I started searching more Sjogren's sites that the problems with my feet, elbows, hands, and legs were Sjogren's related.  Good luck with your appt. with your Rheumy.  Hope you find some relief. Roxanne
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Avalanche on April 06, 2009, 05:12:07 PM
Hi Kymom

First of all- everyone can just call me A- short for Adrienne. my real name. I'm a fan of LOST, and went to the nickname generator, and Avalanche is what it came up with, I kind
of fancy it.  Do your feet/toes get red and swollen? I'm just going nuts. My new GP (my old one left the practice in the beginning of this) told me "we'll figure this out",
so I hope he has some trick up his sleeve.
Also, btw- I am also menopausal, I have seen similar complaints (buzzing, etc) on the power-surge web site.. could it be a weird combo of things?
A
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: wednesday mc haggis on April 07, 2009, 02:12:17 AM
A

  just wanted to welcome you to the forum.

   I think youve been given good advice in seeking professional help from a good rheumatologist , write  your symptoms down so you dont forget to tell them anything, and as ppl have suggested to me and im now doing, keep a diary of your symptoms to build up a picture of how it all affects you.

  we cant diagnose anyone here just share our own expereinces and knowledge.good luck with your doctors, and hope you get some answers and relief soon

T x

   



 
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Babs659 on April 07, 2009, 04:40:28 AM
Hi, A.  Wow, you've got very definite symptoms of something, and I hope you can get a dr. who takes it seriously.  I have burning pain in my palms and soles that is worse at night.  I have Hashimoto's, Raynaud's and Sjogren's.  I was also a very active person until a few months ago, and the meds are just now starting to kick in, so I don't know yet what level of activity I'll be able to resume ( I was a runner).

Also, I can SO relate to your statement that you feel awful but not exactly fatigued.  For that reason I had my GP run all kinds of bloodwork because I was sure there was something horribly wrong with me.  Turns out it was the Sjs, and when the rheumy put me on prednisolone I started feeling better.  I do want to point out that my anxiety level was through the roof because I didn't know what was happening to my body.  That definitely caused my symptoms to worsen, so it's important to try to meditate or something else that will help you to relax.

I sure hope you feel better and please let us know the outcome---even if it's not Sjogren's.

Babs
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Avalanche on April 07, 2009, 05:38:09 AM
Hi Babs

A few months ago? How did your symptoms begin? Was it as rapid as mine?  I knew something was really wrong, as I started having bad dreams where I just knew I had something horrible. Still have them.
Last night was really bad- my feet and legs throbbing, I never got comfortable. But how do you convey that? I feel like I am being squeezed.

I feel like my life as I knew it is over, and that's so sad and scary to me- I have a hard time focusing or doing any work. Then I think, wow, this is only 3 months- what will I be like in a year?  I am normally the most upbeat and optimistic person, but I find it hard to be cheery these days..

Have an appt. with the Rheumy this afternoon- will make her test me
A


Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: ruby52 on April 07, 2009, 06:34:40 AM
Hi A.I sought help when I started having problems with my feet.The Podiatrist completely missed the boat giving me pads to stick in my shoes.In addition to burning,tingling and color changes I had cramping and spasms in my feet and legs.A neurologist did an EMG,had it twice actually and dx sensory neuropathy.It's been a long road and taken alot of tenacity but I got a dx of Sjogren's,and fibro.My symptoms in my feet have calmed down but flare up from time to time and wearing regular shoes are to painful.I do still have a feeling something else is lurking and all my Drs. don't disagree we just deal with what comes up.Trust your instincts and keep searching for answers.You know something isn't right.Good luck.
                                                                                     Ruby
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: harrigan on April 07, 2009, 12:43:35 PM
Try not to look too far ahead A - just deal with the here and now, as once you get a diagnosis you will start treatment which will alleviate if not remove symptoms.  I've had a month of plaquenil and am gritting my teeth to get to the 3+ months stage when it starts to work. 

What made the difference for me was knowing I had a GP who believed my symptoms were real and a Rheumy who started me on treatment straight away.  When you feel secure and reassured by those treating you, you will feel more able to deal with it all.  Good luck A and keep posting xx Ailsa
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Avalanche on April 07, 2009, 01:22:41 PM
Okay- so just got back from the GYN and the Rheumy- 
She doesn't believe it looks like sjogren's, tho she doesn't do the Schirmer test (she has several patients with ss) but she does think my main worry right now is the feet, so she wants to try to address that, which makes sense. If my feet didn't bother me, I'd feel better all around. So I'm trying Nifedipine for a month, then I go back.

In the meantime, I have back to back appts with another  top Rheumy and a good Neurologist later this month. At least I'm lucky to be able to get appts at the drop of a hat!
I just hope for a better night tonight...

I'm not trying to fit into a diagnosis necessarily, I just want to feel a little better. What specifically does the Plaquenil do? Or does it just suppress all the symptoms?

Thanks to all for your input
A
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Katybarstool on April 07, 2009, 01:26:42 PM
Hi A

I was diagnosed with Raynauds around Christmas time, and given a dug similar to the nifedipine. Mine is called Amlodipine. Together with the amitriptyline for peripheral neuropathy, it has made my feet so much more comfortable. I hope you get a good result too.

Kathyx
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Avalanche on April 07, 2009, 01:33:30 PM
Hi Kathy
Oh yeah, I was taking Amplodimine too- that gave me hot flashes and pounding heart- but maybe this will too.

So what's with amitrypline? Does that work on buzzing/tingling/throbbing, or sharp pain? I will ask the Neurologist about that..
I still have neuropathy from the squashed nerve, so I have a mixed bag. My dream would be if a lot of it was from that, and it would heal somewhat.

So how does your Raynaud's manifest? Mine seems to go all the time, but I never got the white- finger thing..
A
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Katybarstool on April 07, 2009, 01:53:58 PM
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 ;D

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.
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Patze on May 30, 2009, 05:57:27 PM
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! :D 

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
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Billydude on May 30, 2009, 10:17:03 PM
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
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: jonnell on May 31, 2009, 03:35:17 AM
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
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Scottietottie on May 31, 2009, 07:29:32 AM
Hi Avalanche  :)

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

Take care - Scottie  :)
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: lynnmarie219 on May 31, 2009, 09:52:52 AM
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!
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: gurs on May 31, 2009, 12:13:45 PM
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.
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: KJ on May 31, 2009, 12:26:04 PM
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
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Avalanche on June 01, 2009, 06:43:46 AM
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
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: gurs on June 01, 2009, 09:49:26 AM
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.

Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Avalanche on June 01, 2009, 01:24:04 PM
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
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Wynter on June 01, 2009, 01:35:00 PM
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.
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: gurs on June 02, 2009, 04:43:04 AM
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.
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: JJ on June 02, 2009, 06:09:33 AM
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
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Avalanche on June 02, 2009, 12:16:16 PM
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
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: JJ on June 03, 2009, 07:23:11 AM
Happy Birthday A....I'm sorry that is going to be a rough day for you, and I'm sorry I couldn't be

any help. However, I do wish you the best and hope that this issue with your feet gets taken care

of fast. The only other suggestion if you haven't already tried it is Epsom salt foot bath...something

about the salts that helped my Grandfather but I couldn't tell you what was wrong with his feet

other than arthritis....I just remember my Grandmother preparing it for him before bed.

JJ
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Avalanche on June 03, 2009, 10:56:11 AM
Hey JJ

Thanks for the Bday wishes- I tried the new drug last night- good news was that I really slept, didn't wake up sweaty , but the bad news is I couldn't get up til 10.   Am just taking it easy.
Forget the no-wheat diet right now, hubby got me the best chocolate ganache cake on the planet- you can be sure I am eating as much of that as I want, then they can put me on any diet they want. Oh and steak and wine, too. And Hawaiian music. That will make for a pleasant day.
Aloha
A
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: JJ on June 03, 2009, 11:03:32 AM
Very happy for you!!! Turned out to be pretty good after all.
Hope it just keeps getting better!!

JJ
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: Katybarstool on June 03, 2009, 12:47:25 PM
Have a wonderful birthday A. Would love a slice of that cake!

Kathyx
Title: Re: Newbie Help! Any of my weird symptoms sound familiar???
Post by: irish on June 03, 2009, 09:53:19 PM
Avalanche, You sure got hit by a truck didn't you. Most people start out slowly and work their way up the ladder with the symptoms. I know I was about 20 or so when all mine started and I had problems all my life. Got diagnosed when I was 60 and I am 66 now.

One thing I am surprised at is that no one has put you on the gabapentin or neurontin. You can start this med at a very low dose. My hubby takes 200 mgm am and noon and one tab at bedtime for his neuopathy and cramps in his lower legs.I have a friend with sjogrens and diabetes with bad neuropathy and she is on 2500 mgm of neurontin every day. If the amitriptyline bothers you the neurontin is a very workable drug. Sounds like you were given something to help you sleep so that is good. I have great reservations about the Tylenol PM as it contains the benedryl which can cause so many issues if taken long term. My hubby gets GERD really bad from the Benedryl as it causes the muscle/sphincter at the top of the stomach to relax causing stomach contents to reflux.

Don't give up yet cause you haven't even found out what you have. You will have to make a different life style while you shop for doctors and a diagnosis. This is another chapter in your life and how you get through it is up to you. I don't mean to sound hard core, but the hard times in life are what make us grow in so many areas.

You will have to keep on your qwest for a diagnosis and it really is a hard job. Make sure to keep track of all the visits and keep notes of who told you what and what tests were done. It gets to be a real nightmare cause the days and the doctors run together. Also make sure that you do have your thyroid checked because you would not believe how ill an out of whack thyroid can make you. It can cause arthritis and aching joints, etc.

There is a good doc at John Hopkins, Dr. Julius Birmbaum -- he comes on this site at times. He has started a sjogrens clinic and deals with neuro problems of sjogrens. He would be a good doc to see also as he would know which direction to send you for more testing. The thing that is so confusing with the autoimmune disease is that so many of the symptoms over lap from one disease to the other. I got diagnosed with sjogrens in 2003 and then in 2006 I was diagnosed with myasthenia gravis,(turns out probably had it 40 years) hashimotos, and severely low t-cells of unknown origen but possibly inherited. I also had asthma and bullous pemphigoid which are also autoimmune. I was floored about the MG and the t-cells.

We just have to take it as it comes. Life will change for you but as time goes by you will get more input from doctors and get more help. The good thing is you have a positive ANA. You have autoimmune and somebody will figure out that you need to be put on prednisone, plaquenil or some other drug. The docs don't like to start the stronger meds too soon as they like to be able to have a pretty clear idea of what is wrong first.There are more and more people being diagnosed with autoimmune diseases and nobody knows why, but probably it is from all the chemicals in the world. My theory at least.

Please just come here and vent and let us know how things are going. This is a great place for help and support and also for information. Irish ;D