Helping mom thru this...

[mom1933]

Mom was diagnosed with Sjogren's a couple of years ago.  Dad recently passed away and during his illness, mom wasn't seen by a Rhuematologist other than for her diagnosis.  That is my goal for her now, but wanted to know if other than dry eyes and no saliva, she has a extremely cold feet with blue coloring in toes.  This has been mainly a winter symptom.  Her newest problem is pain in the outside of her thigh.  Until we get an appointment, can anyone tell me if this the probably related to Sjogren's?  With all that I've been reading, I'm pretty concerned for her. I would appreciate any suggestions.  She is 78 now and doesn't do much on the computer by herself, so, here I am.   

[Scottietottie]

Hi 

Welcome to Sjogren's world. It's good to see you are looking for info to help your Mom out. A lot of people with Sjogren's also develop something called Raynaud's phenomenon (sp?) which causes fingers and toes to go white, blue and hurt like hec! That could be happening to your Mom.

Has she had her thyroid checked because feeling cold is a possible symptom of hypothyroidism - and it can go along with SjS too. Unfortunately autoimmune diseases often travel in 'packs'. Aches, pains and fatigue is all too common.

I hope you find our site helpful. You will certainly get support here.

Take care - Scottie 

[KellyG999]

Hello, mom1933.

Welcome, and bless your heart for coming here to help Mom.

I also have very cold feet. If I go out in the cold even for a few minutes in dress shoes and nylons, my toes go numb and turn white. I then develop sores and blisters on my toes. However, "blue" makes me think of low oxygen in the tissues. How do her fingernails and lips look? Has she had a simple oximetry test to look for low oxygen at all? It's just a painless finger probe. You may want to ask the doctor, when you are able to get in.

I have muscle pain, typically all over but I know others have it more concentrated in one area.

Good luck, let us know how she is doing.

KellyG   

[Bucky]

Hi mom1933 - it's nice to have a daughter looking out for Mom.   

I have the cold feet (and hands) too.  I notice it more in the winter months than any other time of the year.  Does your mom wear socks to bed?  I find that helps. I've been known to wear two pairs of socks when I'm at home. There are many times I am wearing my boots inside the house my feet are so cold.   

As Scottie mentioned, it's not uncommon for us Sjoggies to also have Raynaud's .

As far as the thigh pain - I get the thigh pain, but on top of my thighs - not to the sides.  The thing I find that helps me is to rub, rub, rub.  I've never really brought it up to the doctor.

There are some wonderful books on the market in reference to Sjogren's Syndrome.  I have five or six of them that I reference quite often.  Here's a link to our Book page:  http://www.sjogrensworld.org/books.htm

Feel free to browse this site and find all kinds of information for mom.  If there is a specific topic you are interested in, if you put that word(s) in the search box to the top right of this page, it will take you to previous threads about that topic.

Bucky

[mom1933]

Hi 

Welcome to Sjogren's world. It's good to see you are looking for info to help your Mom out. A lot of people with Sjogren's also develop something called Raynaud's phenomenon (sp?) which causes fingers and toes to go white, blue and hurt like hec! That could be happening to your Mom.

Has she had her thyroid checked because feeling cold is a possible symptom of hypothyroidism - and it can go along with SjS too. Unfortunately autoimmune diseases often travel in 'packs'. Aches, pains and fatigue is all too common.

I hope you find our site helpful. You will certainly get support here.

Take care - Scottie 

Hope I'm replying the right way, I'm soooo new to posting.  Thank you for your suggestions, I will check in to Raynaud's.  I hadn't heard of that before now.  Mom did have her Thyroid checked years ago, for hair thinning, but it was negative.  It looks like I have so much to learn.  I have used another forum when dad was suffering with his issues prior to his death and have found alot of comfort and support in them.  Thank you for your help.

[mom1933]

Hello, mom1933.

Welcome, and bless your heart for coming here to help Mom.

I also have very cold feet. If I go out in the cold even for a few minutes in dress shoes and nylons, my toes go numb and turn white. I then develop sores and blisters on my toes. However, "blue" makes me think of low oxygen in the tissues. How do her fingernails and lips look? Has she had a simple oximetry test to look for low oxygen at all? It's just a painless finger probe. You may want to ask the doctor, when you are able to get in.

I have muscle pain, typically all over but I know others have it more concentrated in one area.

Good luck, let us know how she is doing.

KellyG


Thank you Kelly for your thoughts.  Last winter mom's feet were so cold that they chaffed.  She does wear thick sock around the house and trys to keep them warm, but just can't seem to get them comfortable.  Before Christmas, her fingers turned blue.  It cleared up after a couple a hours, but it was still scary to me.  I am aggresively pursuing an appt with a Rheumatologist to learn all of the things I will need to know to help her out.  She is 78 and very frustrated with doctors, so wish me luck on this one.  I will be sure and keep you updated.  Thanks again.   

[mom1933]

Hi mom1933 - it's nice to have a daughter looking out for Mom.   

I have the cold feet (and hands) too.  I notice it more in the winter months than any other time of the year.  Does your mom wear socks to bed?  I find that helps. I've been known to wear two pairs of socks when I'm at home. There are many times I am wearing my boots inside the house my feet are so cold.   

As Scottie mentioned, it's not uncommon for us Sjoggies to also have Raynaud's .

As far as the thigh pain - I get the thigh pain, but on top of my thighs - not to the sides.  The thing I find that helps me is to rub, rub, rub.  I've never really brought it up to the doctor.

There are some wonderful books on the market in reference to Sjogren's Syndrome.  I have five or six of them that I reference quite often.  Here's a link to our Book page:  http://www.sjogrensworld.org/books.htm

Feel free to browse this site and find all kinds of information for mom.  If there is a specific topic you are interested in, if you put that word(s) in the search box to the top right of this page, it will take you to previous threads about that topic.

Bucky

So many replies already today.... thank you Bucky for your assistance.  I feel sure I will need more of it in the future.  Mom hates wearing sox to bed, but maybe she should keep trying.  She wears them all the time around the house, I should look into some boot style slippers for her too.  I looked at Raynaud's just a while ago and it looks like that is certainly a possiblity.  I think I'm headed for a lot of learning to do to help mom.  Wish my luck, I will most likely be back for more support.

[kim31072]

Hi and welcome to the forum.

Raynauds does sound likely as the color changes can be noticeable especially in cooler temps,handling cold drinks or even getting things from the freezer.The changes are red,blue or white and some go thru all three.

Here is a link from Mayo that explains it further.Hope you get a rheumy to see her soon and its a good one.

Take care




http://www.mayoclinic.com/health/raynauds-disease/DS00433/DSECTION=symptoms

[Daisy1234]

Hello Mom1933:

As the other posters mentioned, the painful feet/blue colouring and response to cold sounds like classic Raynauds Syndrome which I too have.

With respect to having pain on the outside of the thigh, I too have this issue, but the pain that I have is because a disc in my lower back is pressing on a nerve and the pain is radiating down the side of my leg. 

I'm currently doing physiotherapy for this, which involves alot of pushing myself up slowly with my hands/arms while on a mat on the floor or a bed and arching my back while doing this.  Basically, I'm doing pushups without lifting my hips off the ground and arching my back instead. 

If you do end up getting physiotherapy for your mother, I would strongly suggest that you ensure that your physiotherapist is a person well experienced with spinal disc issues as not all physiotherapists are created equal when it comes to dealing with spine problems even though they might say that they are.

Daisy

[mom1933]

Hi Daisy,

Thanks for the information.  Mom went to her PCP in September and was told it was not a disc issue but rather a muscle issue and sent her to therapy.  Medicare didn't cover it so she tried to do it at home and with exercises to no avail. I don't believe it runs down her leg, but it does radiate from jsut below her hip to her knee.  Someone else replied to me that massage helps, maybe I will look into that for her until she can see the dr.  It's frustrating that after the death of dad, she is going thru this alone. I thank you again for your help... I'll check back as soon as I have something more to offer. 

[gmomjuju]

I have really bad Raynaud's but this leg pain sounds like another issue that I had.  My primary care thought that it was back related. My insurance paid for PT.  If anything after a few weeks it was worse.  Wound up going to the rheumatologist. He said it was trochanteric bursitis and gave me a steroid shot (sept) and I have not had any problems since.

Judy

[slccom]

I have the pain in the  side of the thighs sometimes. In my case it is probably fibromyalgia.

I'm sorry about your father. I still miss mine very much.
Sharon

[kim31072]

I found an article from a reputable massage therapist who publishes question/answers for other therapists and patients in a magazine for Massage therapists and it mentions massage and SJS.

You need to make sure your mom is not in a flare and definately research your choice of therapist and make sure they are educated in AI illnesses and do not aggravate the condition/system with a massage that is normally done on a regular patient.They need to know not to stimulate the immune system as it can actually worsen the way you feel and how you react to the massage itself.

This is a very informative website esp for people who are dealing with multiple AI issues.http://www.massagetoday.com/mpacms/mt/article.php?t=24&id=14015

[mom1933]

I have really bad Raynaud's but this leg pain sounds like another issue that I had.  My primary care thought that it was back related. My insurance paid for PT.  If anything after a few weeks it was worse.  Wound up going to the rheumatologist. He said it was trochanteric bursitis and gave me a steroid shot (sept) and I have not had any problems since.

Judy

Thanks Judy, I will keep that in the back of my mind.  I am looking for a new dr as we speak.