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

[Avalanche]

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

[harrigan]

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

[Nathan]

Have you noticed any skin changes? Darkening skin, weird rashes, splotches, whiter nails or anything to that degree?

[Linda196]

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.

[Avalanche]

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

[KYMOM]

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

[Avalanche]

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

[wednesday mc haggis]

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

   



 

[Babs659]

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

[Avalanche]

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

[ruby52]

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

[harrigan]

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

[Avalanche]

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

[Katybarstool]

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

[Avalanche]

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