New Member with questions about foot and leg problems

[KYMOM]

I have just found this site. I have never posted on a site because most of the sites I've come across are years old.  Was diagnosed with Sjogren's in the spring of 2008. I have found that symptoms vary greatly from person to person.  I have been trying to find information on the web and from Docs on some of my symptoms but have not had great results.  I used to walk for 4 to 5 miles per day at a fast pace.  About six months after diagnosis the balls of my feet started to hurt.  I had trouble walking for exercise.  I did not have as much of a problem with regular walking in my daily life.  Most of the trouble occurred when I walked for exercise.  I went to Doc and to Podiatrist and was fitted with inserts.  The inserts proved to be more of a problem than walking without th inserts.  I can now do about 2 miles and come home and ice my feet and I do ok.  Some of the other problems I notice: when I drive the heel of my right foot will get uncomfortable (not necessarily hurt but be extremely uncomfortable), I cannot put pressure on my elbows when I lay and read or hold a book (my little fingers get numb), I have learned to prop the book up and not put pressure on my elbows and I do not have as much of a problem, When I sit in a chair, especially a hard chair, the back of my right thigh starts to hurt and when I get up it takes a minute before I can walk right.  Have been tested for Neuropathy (came back negative) and cannot get answers.  Anyone having any similar symptoms?  Roxanne

[Linda196]

Hello Kymom, welcome to Sjogren's World.

I've had a few similar problems with my feet, but luckily my inserts helped immensely...still can't walk the distances I used to , but now it's more because of the fatigue. I also have inflammatory arthritis and a noticeable reduction in the strength of the various ligaments and tendons that support the bones of my feet, so that may be my problem. The technician who made my orthotics said he found "excessive laxity" in the joints of my feet, and shifting of the various structures enough to compromise the nerves. I did notice an actual increase in the sensitivity of my feet to any touch for the first while after I got the orthotics, because apparently previously pinched nerves were regenerating.

Many of us are prone to the type of numbness you describe, and also carpal tunnel syndrome which is a similar effect on the other side of the arm (elbow pressure effects the ulnar nerve, wrist is the radial). My neurologist acknowledges the "phenomenon", but is at a loss to explain it, since he can find no specific damage to the involved nerves, they just seem much more sensitive to pressure than usual.

I think you'll soon get many replies to your question, as we all get to know you and welcome you, and you can always find out more about nerve involvement by doing an "in site" search, using the search box at the top left of the page.

[Chickpea]

Hi Roxanne

Welcome to SjS World.  It's good to meet you although, as people here always say, I'm sorry it had to be this way!

I'm not medically qualified so I can't give advice, but what you describe sounds like inflammation which is very common with SjS.  Did you have blood tests when you were diagnosed?  Do you know what your rheumatoid markers were, or whether your specialists were concerned about them?  

Maybe you could tell us a little bit more about your journey to the SjS diagnosis?  Are you on any medication, Plaquenil for example?  Or pain meds?  

From what you say it sounds to me as though you're approaching all these changes in a really sensible way, finding new ways of doing things and making the adjustments you have to.  How are you feeling in yourself?

Take care - Chickpea

[Scottietottie]

Hi Roxanne 

Welcome to Sjogren's world.

What medications have you been given and are you on anti-inflammatories?  Too often tests come back negative!!

Take care - Scottie 

[KYMOM]

Thank you to Linda 196, Chickpea, and Scottietottie for your responses.  I felt that my problems were related to the Sjogren's but had difficulty because the symptoms of SJS seem so broad and also vary greatly from person to person.  My podiatrist said that it was not related, my Doc could not find answers and I do not deal well without answers but it seems that with SJS there are more questions than answers.  I am not currently on any meds because I have had success with finding coping mechanisms for most of my problems.  Ice and Alieve do wonders!  I am so excited and relieved that I have found you that it just brings tears to my eyes to know that I can have support and answers to some of my questions.  Roxanne

[KYMOM]

My Journey, It started with an enlarged sub-mandibular gland on the right side that extended past my jaw-line.  Several visits to Doc with different meds.  Would not go away and nothing worked.  Sent to surgeon for biopsy.  After results surgeon sent me to a ENT for a consult-Left the ENT with a surgical appointment to remove "it".  During this phase I had blood work that showed elevated Rheumatoid factor and some other suspect markers.  Decided to go to University of KY for a consult with a throat specialist.  He gave me several options of what the problem could be and I made appt with rheumatologist.  She confirmed Sjogren's.  The enlarged lymph nodes seem to just be part of the picture.  Symptoms vary including the previous reported.  Have some problem with depression and I have problems with remembering what I went to another part of the house to do when I get there.  Takes a minute to catch up.  I have been traveling the site and reading different posts and have found much helpful information.  Thank you. Roxanne 

[Katybarstool]

Hi Roxanne

Welcome to this wonderful family.

I understand tha foot problem. I was diagnosed with arthritis in my feet around the time of the SJS diagnosis, and I really struggle with shoes too. I have very flat feet, and the instep goes into spasm when I am trying to put my shoes on. It has defintiely changed the way I feel about footwear. I think a pair of horseshoes would be best for me, so I don't have to keep taking them on and off

Kathyx

[Stillinlimbo]

Hi Roxanne
And welcome. I am fairly new, but do not have a diagnosis. I cant walk more then 10-20 feet due to the pain, weakness and cramping in my leg muscles, so, I applaud you for continuing to walk and excersice.
Cathy

[Patze]

Hi Roxanne,

Let me also welcome you to the SJS World!  Please do take some time and check out the tons of topics that are listed, as I'm sure that you'll find some information that might answer a question or two that you might have.

I know what you mean about the pain of trying to walk when you've been sitting for awhile - wow, it was like walking on glass shards.  I'm so glad I haven't had to deal with that in a while, but I still get the very stiff muscles, even on Lyrica and Flexeril.  I'm thankful that it could always be worse.

Again, welcome and come by often.

Take care -

Patze

[lynnmarie219]

Hi Roxanne!

Welcome to Sjogrens World!

I'm so glad to hear that you are already finding the information and especially the support and friendship here so helpful! I also agree with you that its comforting to know that you are not alone in this and that others can understand what you are going through and not judge you!

As far as the stiffness after sitting for awhile..I can relate! And as for the waling...I cant walk as far or as long anymore as I used to but mine is usually due to pain that I get in my hips and/or lower back.....after a little rest or ice....its ok again.  I did have to go to Physical Therapy for awhile when it got so bad that the pain was almost constant and that helped me a lot!

[jonnell]

Hi Roxanne Welcome to the forum.  My name is Jonnell and my 4 year old daughter has sjogrens.  She has a lot of trouble with leg pain.  Her Rhumy put her on naproxen which is in Aleve and it seems to help better then advil motrin or tylenol.  You might give it a try.  Jonnell and Jenna

[Rostradamus]

Try Wrong Diagnosis.com for a fairly complete list of symptoms and complications associated with Sjogren's Syndrome. Also don't expect doctors to be informed on all of it. I've read well over two thousand pages on Sjogren's alone as well as other autoimmunes ,complications and cancers. Also NINDS.gov  Natioal Institute of Neurological Disorders and Stroke. At Pubmed you'll find the breaking edge research and cuontless studies. Research  Neurolgical manifestations in primary Sjogren's syndrome. Central nervous involvement contributes to many things some of us experience. Also remember Sjogren's is a systemic inflamitory disease, swelling around joints and wre nerve bundles pass affects functions and causes pains, just like Carpal tunnel.I know all this first hand. Too much first hand. Sjogren's also can demyelinate just like MS ,isn't that special. My case is called ;severe, rare, complex, "you are an anomaly". The exact diagnosis of what is destroying the vertabra,sacrailliac , innominate, and hips, has not been made. 6% of Sjogren's patients develope Lymphoma, usually a rare one, and with Sjogren's numerous hematological anomalies many test are invalid or unreliable. TB test has to be the Quantum gold test, PSA test are invalid for 50% of men with Sjogren's. When you test is important too.Tested when you are flared . So how many doctors even know this stuff? I had to take in downloads and politely make them aware to help diagnose me. I use herbs, have to. I have bad to life threatening side effects to over 90% of drugs I've ever tried. However I've also studied Herbology side by side with formal drugs, chemistry and medicine over 30yrs. Research Borage oil , Gotu kola, Ginko Biloba, Blessed Thistle for CNS problems,  and Burdock, Devils Claw for inflamation. PDRhealth.com  MedlinePlus.com   HolisticOnLine.com . More on Sjogren's, http://www.niams.nih.gov also Natioal Organization for Rare Disorders(NORD) http://www.rarediseases.org  MayoClinic.com and of course Sjogren's Syndrome Foundation. Do not rely on a doctor for information. This is a rare disease and a big study many will not put the time into this much further study. They already have thier shingle and clientel. We are a lot of work. You have to find those special doctors who truelly are interested or care. You need to know questions to ask to test the extent of there knowledge. My experiance, all receptionist say the doctor is studied in Sjogren's, and they willall take lots of money for your initial visit. But, do they have any Sjogren's patients? Have they ever diagnosed it?  The More You Know The Better. Not always fun or easy, just true.  Rostradamus

[KYMOM]

Rostradamus, Thank you for all of the info.  I copied your post so I can check out the info. 
Wow, I feel for you with all that you are going through.
All of this is so new and it is hard to get my head around everything.  I wonder frequently if something that is going on is a symptom.  This site is a wealth of information. 
Roxanne