new symptoms for a few months now, some longer i'm trying denial any ideas ?

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panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 3/4/2011 4:35 AM (GMT -6)   
I'm having a lot of Sjogrens symptoms:
terribly dry eyes, nose mouth throat

others my skin at times i want to itch it off my body. i have a cough that hurts it is shallow more bronchial than lung i cough up phlegm that is anything from clear and stringy to green and solid, I have had more migraines and combination headaches... (tension, possibly sinus and allergy) though i typically haven't been one to suffer with that.

My biggest fear is i have always learned quickly, retained things well, I am really struggling with my memory i can't find words like i will see an apple and ask someone to grab it for me but i will call it something else. this happens more when i am fatigued but not always. My speech is slower and slurred almost like i am drunk (my husband is a cop and that is how he explained it) I can't focus, I have gotten lost twice in familiar places, once i went to a quilt store and i couldn't remember how to get home and the second time was similar. (thou direction not my strong point)

My hands feel heavy sometimes and i am clumsy and drop things often, I fall sometimes i do use a cane on occasion I do the shuffle walk often.

Does anyone with lupus, fibro, RA, gulf war, gerd, ibs, ptsd, migraines, neuropathy, depression (mild) or mild anxiety, trouble sleeping have any suggestions? or diabetes

my meds : methotrexate once a week, orencia infusion once a month, prozac, glucophage, topomax, imitrex, oxycodone ER, klonopin at bedtime, massage weekly, physical therapy weekly, vitamins c,d, calcium

gall bladder out and complete hysterectomy

also.. What friggin Dr. do i see? family, rhuemy, lung, i also need bone spurs on my foot removed and i am going in to have a mild nerve block surgery this will be the third one on the 10th if it works for a couple of months which the other one did i will have surgery to help the nerve pain, it wont help the back pain.

Has anyone just quit treatment? I am in a flare now... i would call it a mild or beginning of one. I just want someone to tell me what to do. I really don't think i can make many more decisions. this week 3 appts plus the outpatient surgical procedure. My brain is scaring me. Thank you so much for letting me vent.
Trust in the Lord with all your heart, lean not on your own understanding. proverbs 3:5

things always look brighter in the morning....
Diana

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 3/4/2011 2:41 PM (GMT -6)   
Hi!
You sound alot like me, with many of the same symptoms. My miseries come and go in flares or batches every 3 or 4 months or so. I actually keep a diary and finally after 2 years am starting to see a pattern, sort of. I have cns lupus, and the 'brain fog' on top of exhaustion too great to even describe, was one of the biggest reasons I had to stop working. And, It's very embarrassing to fall in public. Now that I am home every day, one of my biggest issues is the reality I am still as sick as I am. I guess I sorta thought I would be miraculously healed, all better, healthy...... lupus free. One big issue is I have not had frequent, prolonged respiratory infections like I used to. I see a family dr, rheumy and neurologist regularly. My neuro defers to the rheumy, my family dr to the rheumy and the rheumy punts everything back to the primary and it all sort a works. So I see my family dr the most. Before I retired on disability this past June, I was seeing a dr. every 3 months. If I stopped treatment, within a week I wouldn't be able to get out of bed because of the joint pain and inflammation, my nerves would be screaming so loud I couldn't hear them over the pounding in my head and rt ear, my left leg would be numb, I couldn't swallow and I would WANT to be dead. And as my rheumy explained at length.... treating lupus today will help ward off worse problems in the future. Hang tough suetoo

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. Vit. B12 2400 mcgs, Vit D 1000U and  Ambien every night.

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 3/4/2011 10:18 PM (GMT -6)   
Thank you for your response. I got out of bed at 1 today to go to physical therapy and massage. I won't off myself but if a big tree fell on me and sent me to my eternal resting place well my family dr i grew up with said that was wishful thinking not suicidal so he understood me well. he also was the dr that delivered me. I now live in colorado and i do have great dr.s

Flares are just hard. I guess if he said this will end in two weeks. I would be like ok... the unknown. I have been sick since the persian gulf war. (that is when i had my first weird breathing and rash) but officially i have been sick for 15 years.

i am embarrassed that i am on disability. for about 4 years now and i am only 40. what embarrasses me too is some days trying to get dressed is hard, maintaining a household impossible. (to keep it clean to where it needs to be for my lungs) its picked up and presentable but not clean like well you get it. I get the nerve thing and every time i swallow i have to think about it like i am going to choke. esp if i am eating. like lou gerhigs or ms.

I have lost 25 lbs and i have been trying, since jan 1 by eating better but i eat really small portions every 2 hours. so i am trying to focus on that as a positive.

I hope you have Hope and joy in each day. I know i thought i would miraculously wake up with no ailments to we must live in a fairy tale...lol I know God has a plan for each and every life he puts here. whether we know what to do with it or recognize it that is a whole other ball game. I am in it for the whole 9 and overtime if needed.

I appreciate your story. Thank you i will keep you updated as the puzzle unfolds.

Diana

Robyn10217
Regular Member


Date Joined Nov 2010
Total Posts : 41
   Posted 3/10/2011 8:43 PM (GMT -6)   
well I can say your not alone... I am in the same boat.. I have tried to tell my doctors can it be my meds, or depression.. I have been taken off meds and put on meds.. I am clueless too... I cant remember things, I cant talk.. when my husband talks to me, he says when I speak to him its like he can see the wheels turning in my head trying to find the words... days I feel so dumb.. first docs said it was the topamax.. now on depression meds... so Diana when you find out please let me know.. cause I am at a loss too, and in a flare..
Lupus, RA,Sjorgrens,antiphospholipid syndrome,Endocarditis & Pericarditis,Migranes

Imuran,Coumadin,Topamax,colchincine,Tramadol when needed, Prednisone

Josborne
New Member


Date Joined Mar 2011
Total Posts : 19
   Posted 3/11/2011 8:51 AM (GMT -6)   
Oh, girls I am just hurting so much for each of you. Before I was sick I use to think people should be able to pull themselves up by their seats and get over it. Boy was I wrong!

I understand feeling like your arms and legs weigh 100 lbs. I know what it is like to fall in public with 3 little kids in tow...to be driving and not be able to get home because I can't see, or think straight, or manuver my arms...again with 3 little kids. It is terrifying.

The meds we take are brutal on our stomachs, livers, skin, minds ect.
Sometimes it feels like the cure is worse than the sickness.

But I also know Lupus has changed my life. I used to be in hurry to do everything...as you know that doesn't happen now, ever! I have so much compassion for anyone who has an illness that makes life a struggle. I get being in agony day in and day out...how that can make a person crabby.

I don't like dealing with an illness that makes me want to die somedays...but I at least see the point now. It would have taken a life time of refining to soften my personality. I am super driven, competetive, hard to please, bossy, critical...the list could go on and on! But I am absolutley changed for the better...So for the moment I can thank God for my Lupus. At least for the moment :)

Again girls, I am sorry for your stuggles. And I hope you continue to vent when you need it. I know it really helps me find perspective when I lean on others. Be blessed...in whatever you find hard today. Hugs

rhondamac
Regular Member


Date Joined Feb 2011
Total Posts : 58
   Posted 3/11/2011 9:14 AM (GMT -6)   
It breaks my heart to read some of these posts! I am well aware of these feelings you are experiencing. Although my symptoms have only been bad for the past couple months, I can relate! It seem that night time is the worst for me. I wake up all hours of the night in terrible pain and I just want to die! I am exhausted every day for lack of a good night's sleep on top of the general fatigue that I have. It seems that my pain is gradually spreading to other areas of my body instead of getting better... even after being put on medications. I take an over the counter sleep aid but it doesn't seem to help much. The rhuemy said to give my meds time to work and then I should start feeling better. My question to him is... WHEN?????
Anyway... sorry to rant! I feel your pain and you are not alone my friends!
I am thankful for this forum because people that do not experience the level of pain and suffering that we have do not always understand what we are going through a lot of the time. But we can be here for each other and give our support and share our experiences.
God Bless you all and I hope you have a better day today!

Hugs!

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 3/12/2011 6:08 PM (GMT -6)   
So thankful and blessed to have a place to vent.I am going to have my brain and motor skills tested. four years after i got home from the persian gulf i did a 6-8 hour battery testing of phych tests, intelligence, and motor skill. I am requesting to have them done again to have them compared as my husband ..well someone put it their husband said they could see their mind spinning, my husband is a cop and he asked me if i was taking narcotics or drinking? no crap. I said nope actually less, i don't drink but i do have pain break thru meds. he said then why is it so hard for you to come up with words and sentences or it takes you forever to get out what you want to say. well i of course cried, and told him that i am having more symptoms and they are probably just from a flare. i see a main dr at the VA hosp on Apr 4 so i have no idea how long it will take to get an appointment.
We have had two deaths in the family with in a week, a guy i grew up with who i would consider a brother has MS and was in the hosp last night he had a stent put in his heart and is doing well i got to talk with him I just felt bad because we don't live close any more he is in the mitten and i am in CO, please pray for my dad one for salvation and he is handling his uncles funeral, his aunt is 84 and lou was 88 WWII vet. they are the best thing he ever had to parents and he only knew them the past 10 years or so. There is a medaling neighbor who has known elsie for 4 months and giving my dad hell. Elsie and lou were married 64 years together 66. So i think she can easily be manipulated, 2 years ago lou and elsie asked my dad to handle all of this and they made all plans ahead of time. He is doing his best to uphold their wishes but the neighbor is trying to make his life miserable, my dad does not need any financial thing from them, had never and he loves them. not believing in God he has a very hard time with death. So not only is his aunt mourning so is he. and to top it off my mom had left on vacation to see her sister in CA. so my moms mom was in the hosp now in a nursing home 4 hours north. (and is an extremely bitter woman) and he has to go take care of her. So maybe he should post on the anxiety page...lol Thank you all so much. reading your words helps somehow.

We will all get through whatever ails us. For some of us this may just be our thorn in our side. I often think of the story of Job and wonder if it was put in the Bible just for me.. now i know it was put in for all the people i see monthly getting infusions, for people on this website, for people who silently suffer, I think... The Lord giveth and the Lord taketh away, blessed be the name of the Lord. It really wasn't the Lord that took all of that away from Job it was Satan trying to prove that Job was only faithful because of what he had, and God said you can do anything to him but you can't kill him,,, and when Job said those words Satan gave up and God repaid Job 10 fold.
It is hard living in pain, but i try to remember this life is just a blink of an eye compared to eternity. I hope I am not offending anyone; that would not be my intention at all. Whatever ones faith is, I am sure they draw from that. But this is my rock, my foundation, it is immutable, just and true and has never failed me.

Thank you again and as i go to bed each night i pray for this webpage/site collectively, that God's hand of protection is over you and that his word will comfort you.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 3/12/2011 10:09 PM (GMT -6)   
Panther Fern,

I didn't edit your post as a courtesy as you are a relatively new member of HW, but please look at the forum rules, particularly

Rule 11: Limited religious references are allowed (ie. "my prayers are with you" or a brief quote as part of a larger post), but the forums should not be used to convert others.

Please refrain from sharing personal religious beliefs, this is an international forum and we do not want to exclude or offend anyone of any faith or of none. Job, Satan, God, and Lord exclude and offend many, while giving comfort to others. We need to focus on discussing our Lupus and health issues here -- there are many other online groups where religious or spiritual sharing is more appropriate.

Thanks
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Post Edited (Lynnwood) : 3/12/2011 9:14:39 PM (GMT-7)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 3/12/2011 10:39 PM (GMT -6)   
When my cognitive dysfunction was at one of my lowest points, my rheumy sent me to a neuropsychologist for testing (exactly like you are talking about) so we could scientifically document the changes in my thinking and in fine motor control (hand work).

I knew things were not normal, but it was still a HUGE relief to see that the scientific evidence supported it and that I wasn't imagining things. (Despite their assertion that I'd lost 20 IQ points, lol.) Cellcept was a miracle med for me, and my brain is so much better than it was, although not what it was pre-lupus.

I think it's great that you have a baseline test to compare to! Mine they just had high school, college, and professional achievements as a base. I hope it gives you some relief to know for sure -- I found my test results really calmed my anxiety about my thinking.

Hope things calm for you soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 3/13/2011 3:22 PM (GMT -6)   
lynnwood, I didn't see that when i first read through the rules. Thanks. I have no desire to change anyones belief system.
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