Multiple health problems/struggling

General
1

Today is difficult. I have questions…but there is a bit of rant In here…sorry.

I have multiple health problems and most, if not all, are flaring at the same time and it’s hard not to panic. I’m 56 and feel 100.

If you don’t mind, I’d like to see what others are suffering from in addition to SS. Here is my list, which by the way, I usually don’t discuss.

SJ. Syndrome
Lupus (comes and goes, thank goodness)
ITP (low platelets)
High blood pressure
GERD
Atypical Trigeminal Neuralgia (very painful)
IGg 3 Deficiency (this plus SS causing
very frequent sinus infections)
IC
Pelvic Floor Dysfunction (very painful)
Morton’s Neuroma and Plantar swelling
Migraines

A few other weird things…

IMHO, this is nuts. Many of these things are painful. Many of these things are active right now. And interfering with each other. My gastro doc wants to do an endoscopy, but she is afraid to since my platelets are so low.

I’m not usually frightened by my health stuff, but I am today.

I think my friends are TIRED of hearing about it and I don’t blame them. No one, including myself could keep up with all of this. My former GP kept sending me to the ER, so I just left that practice and found another, but she wants me to pay $3000 yearly out of pocket for the privilege of seeing her.

My neuro who treats my ATN, gives me Percocet for emergencies, but sometimes I have to take 1/2 of a Percocet for some of these other things. I don’t know what to do. Is this acceptable? Should I keep my mouth shut, since it isn’t too often?

Well, I gather it is relatively common for people with SS to have other health conditions. Do any of the other conditions I have ring a bell?

Ok…I’m going to do some deep breathing now.

2

Breathe….. I am so sorry you are going through all of that. It is scary how intertwining these things are and they seem to set each other off. IMHO, if you need to take something once in awhile to get through the pain, do it. We're not talking about abusing them so you don't have to face the issues, you're talking about functioning. I tend to want to avoid meds purely because of the sheer number of meds I already take. More chemicals scare me but pain is pain. Sometimes you have to.

Can I ask where you live? I've heard that there is an upsurge in "concierge" doctors. They will see people and pay very close attention as they keep the caseloads small but they basically charge a yearly "membership" fee. I wonder if that's what this doc is doing. Sign of the times in the US. Or at least in NY.

While I can't imagine what you are going through with so many variables working on you, I do understand the fear behind it. I'll be praying for you, for peace and strength. And keep leaning on those of us that get it.

3

Thank you
I live in Florida

4

Dear Nomad,

I have to tell you that I have so many things that I never even begin to mention all of them, as people think you're a real headcase if you do! I never remember all of them or have enough time or paper space to even get started! But here are a few highlights:

Psoriatic Arthtitis primary (spondylitis type)

Sjogren's secondary

Raynaud's Phenomenon secondary

Fibromylagia (Rhem thinks was caused by chronic pain of the 2 systemic Autoimmunes.

Degenerative disc disease

Degenerative facet disease

Spinal stenosis, cervical and lumbar

Scoliosis, cervical and lumbar

Costochondritis

Osteopenia

Tendonitits

Gerd/Reflux

Hiatal hernia

Collapsed discs/bulging discs

Scaitica...

See, sounds like a hypochondriac!

Nomad, I am very sorry you have so many things wrong with you, but especially sorry about the TN, I've seen that pain first hand!

Hang in there girlfriend, we're all on you side!

5

Nomad,

You are right. Sometimes it does all flare at one time. I have constant sinus issues, acid reflux, IBS, OsteoArthritus, elevated blood pressure....not to mention the extreme dry mouth and lightheadedness, insomnia. I never dreamed all of these things were inter-connected. I absolutely know how scared and rotten you must feel.

Just curious..........does anyone ever have a "good day". I mean a really good day, where you don't wake up exhausted, but actually have a little energy. I probably have one of those days every few months. I think depression has now taken over.

We all share this journey with you. Please don't panic. Easy for me to say, I know.

Sending you as many hugs as you can handle.................Connie

6

Use the internet and websites for support…mentally…as far as physically…get your self a team of doctors that support you…call all of them until you feel better…im on 17mg of prednisone and high doses of pain pills…I also see a shrink and use ativan for days like today…two more things…pray…pray…pray…he hears you…and finally…get hobbies…coloring crochet…whatever youtube has…distraction is key…I love you…surround yourself in its light…donna…803-■■■■■■■■. . Text or whatever…be strong

7

You sound so much like me! I have so much wrong with me, and I honestly don't know the names of everything wrong. At times I want to smack doctors when they rattle off what is wrong with me, because they say it too fast for me to understand them. I have been in a really bad Fibro and SS flare now for 2 months, and my PCP (bless him!) is trying me on different pain medications, and none of them is giving me any help or relief. I personally think my pain doc is a joke, but what else am I supposed to do? The pain doc DOES help my back pain, which that alone makes it worth it. The other pain stuff? Not so much.

I am on high dose of pain meds, which are going to be changed this afternoon because the one I'm on is not working. I'm at a very strong 7 on the pain scale, close to an 8. I have Primary SS, and Fibro. I also suffered from ITP as a child, and it only acts up when I need major surgery. The Rheumy put me on Neurontin, and it was reacting to my pain meds, so stopped taking it. Now I will talk to my PCP that I'm seeing today, because I wasn't getting the zapping/stabbing pain while on it, now that I've been off it for a few weeks, it's coming back.

Like you, I think sometimes I just feel lost in a pile of health problems, with friends and family jumping ship, because you know, if they've never heard of it, then you're a hypochondriac. Even when everything you have is documented, they just want to believe what they want to believe.

Stay strong hun, we are all going through our own kind of "possession." We all are trying to beat the demons back, just don't let them win. We are here for you to rant/cry/tantrum with. We all feel like we need to have a good cry once in awhile. We just have to find the tears for it. LOL

*Gentle Hugs*

Stacie

8

I think the majority of us have multiples. I have sjogrens, asthma, neuropathy, myositis, osteopenia, ckd, hypertension and chronic costocondritis. My fatigue level is usually in the pit. Did I say that my memory is not as sharp anymore and I can no longer do the kind of work that I loved. I have had difficulty with mobility for a long time and now that my current flare is over I have been attempting to walk more. This resulted in me spraining the ligament in my left foot.I can’t be around anyone with a respiratory infection or it sets me off. Good days come and go but it’s important to keep focused and not get stuck.



It’s ok to take something for pain when you really need it. I try to hold out until it gets bad then it’s harder to get over the pain because I waited too long. You need to find an md you trust who will work with you and communicate honestly. Are you seeing a rheumatologist or gp?



Support is important to getting through the rough days. Keep posting.

9

I am always so impressed with the fabulous posting all of you provide! It helps me to realize I am not alone. Several of the postings I have sent to my kids (4) to help them understand.

I too have such a long list of dx that I am always leary of telling most people. What surprised me today, was how many others suffer from the same diseases.

I took a very bad fall 8 days ago, hit my head twice, bruised my shoulder and my arms are covered in bruises. However, the worse thing was my left ankle that twisted more than 90 degrees, such intense pain and burning. I didn't mention that I work full time still and watch my 5 yr grandson and his 9 month old sister 3-4 nights each week! Because I am so tired of going to doctor, dentist and eye doctor; I just couldn't take time off nor did I have the mental strength to make another doctor appointment. Now the ankle is still severely swollen and badly bruised I know I need to see someone tomorrow.

Thank you to all of you for freely supporting me and one another. I will pray for sjogirl and any and all who need healing and loving support.

10

These posts mean the world to me; thank you very much! Today was better. I spent a good nine hours in a chair with a heating pad yesterday and it was maddening and at times, frightening because I had such diverse pain. Today I even got to go out and ran one errand. I do have good days. I seem to have to really pace myself. I’m optimistic about tomorrow. I see I’m not alone. This is sad, but I genuinely appreciate the support and kind words. Praying for a pain free and blessed weekend.

11

Sjogrens/ Auto-Immune: so many of these are related to each other or under the umbrella of auto-immune. So much of our medicine is focused on 10 minute “problem focused” visits that we only get to talk about our dry eyes NOT our Rheumatoid Arthritis, Lupus, Trigeminal Neurolgia, reaction to Restasis, nausea and vomiting, headaches, foggy brain, dry mouth with constant Thrush, sun allergy/reactions, etc ( by the way I don’t have Lupus, or at least I don’t think I do). So we are pretty limited by that alone. Add drs who don’t know or care what they are doing and it gets really scary, then $ issues and insurance issues and pain and disabilities–sometimes it’s hard just surviving. I think it’s normal for us to sometimes just lose it under the weight of it all. No matter the support we have from family, friends, and people here we still have to face this illness alone. Everyone can help but sometimes the weight of it gets us down. I’m sorry, Nomad, that you are going through such a crappy time. I hope and pray that your tomorrow is a better one. I also know that you shouldn’t sell yourself short in the friend dept, after reading a lot of what you’ve written on here and on LWTN for quite a while, I know that you are a good friend to lots of people, my guess is that your friends are probably not tired of hearing about your health issues either. Just my 2 cents. Take care.

12



Nana times 10!! said:

I am always so impressed with the fabulous posting all of you provide! It helps me to realize I am not alone. Several of the postings I have sent to my kids (4) to help them understand.

I too have such a long list of dx that I am always leary of telling most people. What surprised me today, was how many others suffer from the same diseases.

I took a very bad fall 8 days ago, hit my head twice, bruised my shoulder and my arms are covered in bruises. However, the worse thing was my left ankle that twisted more than 90 degrees, such intense pain and burning. I didn't mention that I work full time still and watch my 5 yr grandson and his 9 month old sister 3-4 nights each week! Because I am so tired of going to doctor, dentist and eye doctor; I just couldn't take time off nor did I have the mental strength to make another doctor appointment. Now the ankle is still severely swollen and badly bruised I know I need to see someone tomorrow.

Thank you to all of you for freely supporting me and one another. I will pray for sjogirl and any and all who need healing and loving support.

13



Connie said: Nana, you do have to get your ankle looked at. I too fell down some stairs at work two weeks ago. I waited a week before I went to dr. I fractured a bone in my foot. Now in a boot for 8 weeks. Please take care of yourself!



Nana times 10!! said:

I am always so impressed with the fabulous posting all of you provide! It helps me to realize I am not alone. Several of the postings I have sent to my kids (4) to help them understand.

I too have such a long list of dx that I am always leary of telling most people. What surprised me today, was how many others suffer from the same diseases.

I took a very bad fall 8 days ago, hit my head twice, bruised my shoulder and my arms are covered in bruises. However, the worse thing was my left ankle that twisted more than 90 degrees, such intense pain and burning. I didn't mention that I work full time still and watch my 5 yr grandson and his 9 month old sister 3-4 nights each week! Because I am so tired of going to doctor, dentist and eye doctor; I just couldn't take time off nor did I have the mental strength to make another doctor appointment. Now the ankle is still severely swollen and badly bruised I know I need to see someone tomorrow.

Thank you to all of you for freely supporting me and one another. I will pray for sjogirl and any and all who need healing and loving support.

14

Connie, Nana, Cynthia, you gals need to be extra careful with these falls! So easy to break bones, I just went through a fall and hip break with my mom. That was the most prolonged hell she and I have been through since losing my baby brother.

We all understand just how sick to death and broke you are from constant Dr appointments, but with falls, you just have to go! I fell in the bathroom one night, hitting the base of my skull, and though I did not go that night, was there the very next day for x-rays. I know even that was too late, but needed to go without an ambulance! Riding in one of those is like a conastoga wagon ride over the Rockies for me! Let me tell you, it's been nearly a year, and has taken that long for my head to stop hurting!

I've never broken bones, other than most of my toes, but have ripped up muscles, ruptured both Achilles tendons, and learned to travel stairs like a crab! Am still teaching my mom to put on an apron or jacket with pockets to keep hands free to hold on to railings, and to keep herself in a position that if she feels a fall to fall ONTO the stairs not down them!

I would strongly suggest some new tactics or PT if balance, strength, or navigation is more of a challenge, I know, it's one more place to go, one more bill to pay, but it could be so very worth it!

Sending lots of love and understanding for my suffering friends,

SK

15



SK said:

Connie, Nana, Cynthia, you gals need to be extra careful with these falls! So easy to break bones, I just went through a fall and hip break with my mom. That was the most prolonged hell she and I have been through since losing my baby brother.

We all understand just how sick to death and broke you are from constant Dr appointments, but with falls, you just have to go! I fell in the bathroom one night, hitting the base of my skull, and though I did not go that night, was there the very next day for x-rays. I know even that was too late, but needed to go without an ambulance! Riding in one of those is like a conastoga wagon ride over the Rockies for me! Let me tell you, it's been nearly a year, and has taken that long for my head to stop hurting!

I've never broken bones, other than most of my toes, but have ripped up muscles, ruptured both Achilles tendons, and learned to travel stairs like a crab! Am still teaching my mom to put on an apron or jacket with pockets to keep hands free to hold on to railings, and to keep herself in a position that if she feels a fall to fall ONTO the stairs not down them!

I would strongly suggest some new tactics or PT if balance, strength, or navigation is more of a challenge, I know, it's one more place to go, one more bill to pay, but it could be so very worth it!

Sending lots of love and understanding for my suffering friends,

SK

16

Thanks SK..................I know my balance is completely off. I'm feeling it more now than ever. My head constantly feels foggy.

17



Connie said:

Thank you for the good advice. I am seeing doctor this afternoon. I'll keep you posted.

SK said:

Connie, Nana, Cynthia, you gals need to be extra careful with these falls! So easy to break bones, I just went through a fall and hip break with my mom. That was the most prolonged hell she and I have been through since losing my baby brother.

We all understand just how sick to death and broke you are from constant Dr appointments, but with falls, you just have to go! I fell in the bathroom one night, hitting the base of my skull, and though I did not go that night, was there the very next day for x-rays. I know even that was too late, but needed to go without an ambulance! Riding in one of those is like a conastoga wagon ride over the Rockies for me! Let me tell you, it's been nearly a year, and has taken that long for my head to stop hurting!

I've never broken bones, other than most of my toes, but have ripped up muscles, ruptured both Achilles tendons, and learned to travel stairs like a crab! Am still teaching my mom to put on an apron or jacket with pockets to keep hands free to hold on to railings, and to keep herself in a position that if she feels a fall to fall ONTO the stairs not down them!

I would strongly suggest some new tactics or PT if balance, strength, or navigation is more of a challenge, I know, it's one more place to go, one more bill to pay, but it could be so very worth it!

Sending lots of love and understanding for my suffering friends,

SK

18

Hi Nomad
I have multiple conditions
Sjogrens
Raynaund
R A
Fibromyalgia
High blood pressure
Celiac
Sleep apnia

I am having a bare able time lately I wanted to know if anyone has sleep apnea my pulmonary dr
Wants me to use the sleep apnia machine but I can’t do it my nose bleeds i get drier than I have ever been even though it has a build in humidifier any advice

19

Hi Maggymae, I have sleep apnea too. I’m having a problem with my mask because of my Trigeminal Neurolgia on my face. The people at my sleep clinic have helped and I am working on my 4th trial mask in the last few weeks. I take Plaquenil and Methotrexate for SJS and that helps with the dryness a little bit but always use the humidifier but the most important thing I do is to use salt water spray several times to clear out my nose prior to using my Cpap at night, it moistens my noise and sinus and that helps. They think the Cpap makes a big difference in your health if you need it. Good luck with yours.

20

Thank you maggymae, TL and everyone. Fortunately, I don’t have sleep apnea. But lately, issues with insomnia.

TL…would you mind sharing how your TN started? I have Atypical TN that started after dental work, but the dental work wasn’t done very well, so I’ll never know if it would have happened under better circumstances. AND somehow, I got SJ. Syndrome during the dental mess. I wild, hOrrid time.

Today was a bit better…but tonight is a little rough.

Will get my heating pad in a moment…