Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: navydad on July 22, 2010, 08:54:02 AM

Title: I need some guidance
Post by: navydad on July 22, 2010, 08:54:02 AM
I had to get out of this house last night,, I had a scrip for neurotonin at the drug store to get so I made my wife go with me while I tried to drive my jeep,, I give up,, I was all over the road,, tried to put it in first gear with out putting the clutch in,, feet burned so bad from the heat off the engine,, told my wife about it,, jsut got strange looks after she said what do you mean your feet burn,, whats the use of trying to explain anything to anyone,,
 Last night was horrible,, I did a lot of repetitive stuff with my arms and hands yesterday,, all night my arms and hands just burned,, when I got up after tossing from 2am on,, I was in tears,, arms just hanging there,, nothing but pain,,, I dont know what to do or who to turn to anymore,, I have been told there is nothing more that can be done,, so what do I do,, truthfully,, if anyone has any answers I would be glad tohear them,,, I have talked to my case manager,, not recently,, but I explained to her what I was going through and all she said was good luck,, I lost it,, I asked her what do you get paid to tell people good luck and thats it,,, arrogance of the normals
Title: Re: I need some guidance
Post by: gphx on July 22, 2010, 10:04:29 AM
Today I went to my pc for a referral to a specialist. It was a battle. Instead he wanted to give me vitamin D. Not only is this ridiculous but he apparently didn't remember he'd prescribed a daily vitamin six months prior. After I went for a walk to try to fax some medical forms. My feet feel like I rubbed skin off but they look just fine. Went to the ER the other day stiff and sore all over like a finger gets when a splinter gets infected. I'm aware your issues are far worse. I wish I had an answer for you as to what the cure is.

If you can't get fixed at the moment is there any way you can get into a pain management center? I don't know what's involved with getting into one but they have things like TENS units which can block even the worst pain sometimes. Some people swear by them claiming they make the difference between life and death. Some are even pretty cheap these days if it works and you need to rent or buy your own. http://www.healthcentral.com/chronic-pain/treatment-36204-5.html

This may sound stupid but my legs just hurt today whereas last week they were swollen too. Someone told me dark cherries reduce inflammation. I found some research that says it's true. I've been eating a bag of cherries every day and my feet haven't been swollen since I started and the pain is less than it was before too. There's nothing to lose - you have to eat anyway - so why not try some. Worst that can happen is they taste good. I don't expect they'll fix your problems but some days just a little bit better is enough to get through.

Talking to most doctors seems like one of those old Twilight Zone episodes. I get comfort in a daydream where I nail their foot to the floor and yell,'DO YOU GET IT NOW?'. I'm so sorry you're going through all this pain and the frustration on top of it and hope something works for you very soon. If I get an answer you'll be the first guy I'll talk to.
Title: Re: I need some guidance
Post by: bob212 on July 22, 2010, 10:06:46 AM
Hi,

Genuinely sorry to read what you're going through.  My thoughts are with you.

Are you taking anything for sleep?  Perhaps you should request it, even something o strong side - at least for a while so you can get some respite.  

I've also read that depression is common among us sjs sufferers even those with "lesser" symptoms. And it may not just be caused by a reaction to our symptoms but a chemical effect in our brains.   Have you looked into that?  I know it won't stop the pain but it may help you get through the day (and night).

I realize these are not "deep" suggestions or solutions; but wanted you to know there are people who care.

Let us know how you're doing

Bob
Title: Re: I need some guidance
Post by: gphx on July 22, 2010, 10:21:54 AM
P.S. Send me your phone number if you need to vent, scream, whatever. I have unlimited long distance.
Title: Re: I need some guidance
Post by: hnybny91 on July 22, 2010, 10:43:12 AM
I totally understand where you are coming from.  I was told by the Rheumo doc the other day that she didn't think I have Sjogren's evn though I have a positive SS-B and ANA in a speckled pattern because I do not have inflamation.  My Husband commented the other day during a fight about how many times I have been to this doctor and that doctor in the last few months and compared me to a family member I am convinced has Munchhaussen's...UGH!

We may not be able to cure you but we all definitely know what you are goping through.  {{{{{{{HUGS}}}}}
Title: Re: I need some guidance
Post by: LizPetillo on July 22, 2010, 11:36:30 AM
The generic plaquinel got rid of my burning hand in the first week.  That's the only drug guidance I can give.

As for not being able to explain to people .. having people 'not get it' ... I fully understand.  I can offer no guidance.  I tell people that I have extreme fatigue .. and they say things like "you should try to go out and have fun it'll help'.  YIKES!!  When I have a Harry Potter Deatheater sucking the life out of me, it is IMPOSSIBLE to go out and 'have fun' ... but they dont' get it and they get ticked at me for 'not trying'. 

I hear ya'.  I cant' offer advice, but I hear ya.
 
Title: Re: I need some guidance
Post by: anita on July 22, 2010, 11:55:19 AM
Navydad,

I thought you were already taking plaquenil.  I would ask your doctor about giving it a try.  But don't expect to notice a difference in a week or even a month.  For most of us, it takes several months to get the benefits.

Plaquenil and neurontin should be okay together but double check with your doc.

Good luck
Title: Re: I need some guidance
Post by: Suzy on July 22, 2010, 12:08:32 PM
I think the pain management clinic is a good suggestion. If the docs can't figure out what's causing it, at least let them help you get some relief.

You're going crazy with the pain, which is completely understandable. I know it's not your only issue, but wouldn't everything be less overwhelming if you hurt less?

I am so, so sorry you're going through this.

Suzy
Title: Re: I need some guidance
Post by: navydad on July 22, 2010, 12:26:40 PM
thank you all for your suggestions,, yes I know I should get into pain management,, I am beyond the pain that is reliefed from ultram,, I know I am depressed,, and how can one not be when you live just to breath,, its a snowball thing,, my daily life consist of watching tv and taking my dog out to the yard,, its not that i want to lay around,, but any walknig is met with pain,, (neuropathy),, and you know what,, I am just so fed up with telling each doctor the same thing over and over,, and I know going to a pain clinic will be just teh same thing,, lets check you out and see what we can do,, but first fill out this 300 page questionarre,, and how would you rate your pain,,, I think at that point I would excuse myself,, go to the car and bring in a ball bat and smash a few ribs and say thats how bad I hurt,, but with the waym y arms and hands are,, I would probably miss him,,
 again thanks everyone for your suggestions,, I will look over them and try,, and I mean try to get a plan together,, I dont kow what it will be,, but first on my list is to get my ENT toactually try to do something about my sinuses,, I kow in the past he has said he cant do anything else,, there has to be something to get this darn infection under control,, I am so tired of gagging on glue,, and blowing out teh same stuff,, I think if I had not got my sinuses so mesed up,, I would be able to deal wit the other stuff,, the ear ringing,, popping all the time,, these dam pills have my stomach such a mess,, and last endoscope showed barretts,,, just something else to worry about,, will that go cancerous without me being aware of it or caught i time,, just so much,, no wonder i;m on the edge of insaniety,,,,
  My sister came over and helped me give Bo a bath,, my dauschund,, I didnt have the strength to lift him out of the tub,, my sister is prob the ony one that actually sees how far I have went downhill,, pants hanging off me,, shirts hangning looser on me,, I have friends coming in from Indiana next month,, she is goingto be horrified when she sees me,, she sears shes going to take me back there to get me proper help,, here they still use leeches,, and bleed you,, I once saw a sign somewhere,, a store or something,, the first line said,, alwyys pretend your in the persons shoes when there telling you something,, dont assume tehre lying to you,
Title: Re: I need some guidance
Post by: inga on July 22, 2010, 12:35:51 PM
Have they ever done the testing for hereditary neuropathies?  Despite having no one in your family with this disease, you can still have that.

My neuropathy is quite bad.  I also have horrible arthritis.  I need to have surgery since the arthritis has pushed bones out of alignment so badly they are damaging nerves.  Some days I can not walk far on my feet....it just all depends on....hmm....on...well, I will be darned, I don't know what it depends on...I have no explanation.

PN is not thought of as disabling as it can be.  There are PN boards with some suggestions how to handle this disease, but honestly, it is a mental battle....all the time, a mental battle to learn to live with a disabling, painful condition.
Title: Re: I need some guidance
Post by: Dolly Dimples on July 22, 2010, 01:41:20 PM
  Dear Navy Dad,
        I am with Bob 212 on this. I do think you should try an anti depressant ,
                       it will help to calm your mind a little, it will do harm to try,

                     As others have said you must get it over to your Doc somehow that you can no longer cope.!
             It might be a good idea if your wife was to see your medics, and stress that you need some help.
                    push it ,              Bless,    Dolly
                                           
Title: Re: I need some guidance
Post by: gphx on July 22, 2010, 01:52:43 PM
'Don't assume they're lying to you'.

I wish. On my last visit to the ER they tested me for:

PCP, Benzodiazepines, Cocaine, Amphetamines, Marijuana, Barbiturates, and Opiates, all of which came up
clean exactly as I told them they would.

Did they run the one test I asked for?

No.
Title: Re: I need some guidance
Post by: inga on July 22, 2010, 02:00:22 PM
Navydad, do you have a 'roundabout' scooter like thing?  If you can't walk, you could get around in that.  I agree that you are stuck in a bad situation and no one has really been able to help you....I am sure you need to get out and get as independent as you can.

Ask about a power chair, and other adaptive devices.

Title: Re: I need some guidance
Post by: sjogrens53 on July 22, 2010, 02:49:13 PM
So far I have been able to keep my pain manageable with plaquenil, methotrexate, and athrotec.  But, when pain gets unrelenting and unbearable prednisone usually does the trick.  I have a love/hate relationship with that drug, though.  Also, when my sister was here visiting (and I was in a lot of pain at the time), she sat me on the floor and massaged my head, back and neck for an hour--pure heaven--much less pain for a couple hours afterwards.

Title: Re: I need some guidance
Post by: irish on July 22, 2010, 02:53:40 PM
navydad, I continue to be sorry that you are having such pain. I am going to be a tough old broad and tell you what I have told you several times already. If you are not on an antidepressant you need to be on one. Anyone who has chronic pain suffers from depression. There are no ifs ands or buts about it. Depression runs with chronic pain. Get thee to a doc and get something.

It will help you sleep and it calms down the nervous system which in itself helps the pain. Sounds stupid, but imagine the pain along with scatching your fingernails on a blackboard making your hair stand on end. With antidepressants the pain is still there, but that end of the rope, nerves and hair standing on end is much more tolerable. You may even be able to sleep better.

I know that men have this macho thing about taking antidepressants but most people, men and women alike, don't understand that the depression is a disruption of the chemicals that are secreted in the brain. When they get screwed up every part of our body is affected big time.

Also, get yourself to a pain clinic. You need to get over the attitude that all the docs are out to get you. This is the way it is with the medical world. We have to fill out those $#**% questionaires and I hate it. I have to fill out my husbands also as his writing is so bad. I hate it. That is what we have to do. These pain clinics can make the difference of night and day in ones life. You can't sit there and complain about the pain all the time if you won't keep on trying to get help.

I am sure you are really mad at me by now, but I am not married to you and don't have to live with you. Get to a clinic and get help. If you have to go to 10 pain clinics to get help, do it.  If you think that jumping off a bridge will take care of the problem you are wrong. It is the cowards way out and hurtful as heck to the family. Families get to the end of their rope over sick relatives. They do not know what to do to help us. The bottom line is that complaining drives our kids and families away. I always think that no matter how bad it gets it is our solemn duty as a parent to endure any hardship that comes our way. It is a way of showing our kids how to live and deal with adversity.

Get you kids to help you find a pain clinic. Ask them for their help and to drive you if necessary. Do anything that you can to get some relief. This means that watching TV isn't always an option as one has to get on the phone and make calls and keep records of our calls. It is a big pain in the butt. We don't feel good and don't have the energy to do this. But we have to do this for ourselves and for our family. Money is always a problem for all of us. What can I say. I guess we all just do what we can and when out money is gone the government will take care of us. That is what they are always telling us anyway.

Get out the phone book or the internet and find the number to a trouble shooting line for people who are in need of doctors. Call a hospital and see if they have a number that you can call to find a pain control clinic. Just get involved and do something and go to them with a positive attitude. I have been slammed and put down by so many doctors but it made me so mad that I just kept on trying to find help and eventually I found it.

I don't mean to make you mad but then again I do. I want you to get mad enough to get back in the fight. Sometimes we even have to change our attitudes when we go to see a new doc. Sometimes it helps, sometimes it doesn't. Just get back on the horse and "go get-um". I am waiting for optimistic information from you. Irish ;D
Title: Re: I need some guidance
Post by: Gerty on July 22, 2010, 03:23:05 PM
Awww navydad it is so frustrating not getting answears from Dr's and stuff and when its your partner makes it so much harder cause they don't understand. I'm in a new relationship with a wonderful man in every way he cooks cleans make sure I have everything I want need. But seems to let me down when I'm not well cause he just don't understand he says he knows he don't have what I have but he just does not understand Ive given him info and sent him links he reads it a little bit but still don't seem to get it.. Big gentle hugs
Title: Re: I need some guidance
Post by: Bopeep on July 22, 2010, 04:49:04 PM
I feel so sorry for you navy dad,
about June last year my Dr put me on a antidepresent first time ever, not only did it help with the drepression but it helped me sleep as well.

I would of never taken antidepresents, actually I refused to admit i was depressed yet would cry for any reason.
Anyway in Oct last year I developed a strange itchy rash on the upper torso.
After several tests all negitive my Dr decided to take me off all medication as he thought it could be a cocktail buildup of pills in the system. Prednisone was a slow withdrawal but eventually i was off all medication. The consequenses of that is I have been in a chair eversince, some days in so much pain I cant bear to even use my hands foe typing. I have the swollen feet and hands, the burning, always the burning,

I have now just started a new medication which is scary to me as its mainly used for organ transplant patients.
but after nearly a year of not being able to move much Im pretty much ready to try anything.

We are heading up to lambing time on our life style block, my husband is a big man and has huge hands which cant help the ewes  when they are having trouble lambing, I am dreading lambing this year which is a shame because those beautiful little baby lambs with there cute faces and wriggly waggy tails just make your heart miss a beat.
how on earth am I going to be able to help birth a lamb or three if i can hardly hold a pencil.
 Anyway navy dad I sure do feel for you I dont recommend going cold turkey in stopping meds and it may not even be the thing you need to do
I recommend the antidepresants they really do help with the pain and the hopelessness of this bloody awful desease we have all got.
If you like Ill post you all a picyure of our first lamb thats born   8)



Title: Re: I need some guidance
Post by: puccini914 on July 22, 2010, 05:37:00 PM
My Doc triedme on several anti D's tohelp with pain  and I must sa that none really helped much, but one di help some with anexiety and contributed to the anti-migraine equation.  That was Trazadone, it also helps some people sleep.  It is so frustrating when people don't understand.  I take 4 Lotab 10's a day and still have joint pain, I'm allergic to all NSAID's and Ultram as well.  I haven't come up with any good explainations about the pain, but when itcomes to fatigue, I tell people, yo know how you feel the first day of flu?  So exhuasted?  That's your immune system on overdrive.  That's how I feel about everyday, unless it's it's a a really good day and those don't come vey often.  I wish the best of luck, please remeber you will have to go through a lot of trial and erro to find the right meds to feel better, but it is worth it to keep trying.  I had 27 striaght days of feeling fantastc in May after 3 1/2 months on MTX, then I hit a big flare ad a systemic infectin of Strep.  I'm slowly fighting my way back, but at least I know I was there once and with the right med I can get there again.  Take care of your self and try to heal.

Title: Re: I need some guidance
Post by: rnathans on July 22, 2010, 07:27:38 PM
I am going to continue where Irish left off and throw in a little more tough love because I don't want you to give up and I want you to get some relief. Although I totally understand your frustration and anger at physicians BUT you have to let it go. It prevents you from dealing effectively with them. New doctors have to collect all that information if there is any chance that they are going to be able to help you. And most of them do review the information. Doctors who have seen you for awhile may not know what to do for you-not because they don't want to help or because they are clueless but because autoimmune diseases and neuropathies can be very difficult to treat. It doesn't mean they don't hear how you are suffering or that they don't want to help. Are there some bad docs out there. Sure. But it is unfair to lump them all together.

I was a medical social worker for many years before I had to stop working. My experience has been that the caring doctors far outweigh the uncaring ones. But they don't have all the answers. And when they can't help it frustrates them too. ( not the same as for the patient of course). Please cut them some slack so you can let them help you.

One other question- is your neurologist a generalist or does he specialize in neuropathy? If you haven't seen a sub-specialist I think it is time to do so. I see a great one in Hershey but I hesitate to recommend him if you are not ready to give him a fair chance, answer his questions and go through any testing he would suggest.

I am pulling for you.
Title: Re: I need some guidance
Post by: PrincessLeah on July 22, 2010, 10:36:09 PM
I know this may be a truly silly suggestion and may in fact be bad for someone with neuropathy--

Have you ever tried non-traditional or Chinese medicine?  The only reason I ask is my GP actually didn't have a problem with my trying acupuncture.  He said a lot of his patients have had success when they haven't had success with drugs.

I'm not sure I buy into a lot of Chinese medicine or Eastern philosophy, but my friend (who is a massage therapist) recommended one to me (he's actually a chiropractor and an acupunturist.)

She said it's very strange, but your nerves are not always logically connected together, so a lot of times if you have pain, they'll work on you systemically.  I've heard from a lot of people that acupunture set them right when pain meds wouldn't.

I'm willing to at least give it a shot.  As long as it doesn't hurt anything, and my GP says it won't, as long as it's an actual doctor and not some weirdo working out of a van.  It may or may not be good for you.

Not trying to proselytize here -- but hey, if you give it a shot, it may at least get you to the point where you can move around with less pain.  If you've already tried it, then never mind. 

My friend said that the good thing about them is their bread and butter is reducing pain, and since they view you systemically, they'll listen to all of your symptoms and plan accordingly.

{:
Title: Re: I need some guidance
Post by: gurs on July 23, 2010, 04:46:14 AM
You need to contact  The Rarediseases.org  website..they might be able to figure this out.  You might have sjogrens, but you also might have something else going
on with it to?

Has your ENT ever went in and checked your sinsues for infections or yeast? my ENT says the only way to get rid of yeast in the sinuses is via surgery?
Try a round of diflucan for a month to see how you feel if its yeast?

Try an antibiotic for a month or two if its infectious to see if it helps?

Im with you sweetie..stuck in bed most of the day feeling like someone just injected me with loads of poision. Its a nightmare to say the least. I feel for you!!

hang in there..

Gursie
Title: Re: I need some guidance
Post by: navydad on July 23, 2010, 09:14:38 AM
I am going to continue where Irish left off and throw in a little more tough love because I don't want you to give up and I want you to get some relief. Although I totally understand your frustration and anger at physicians BUT you have to let it go. It prevents you from dealing effectively with them. New doctors have to collect all that information if there is any chance that they are going to be able to help you. And most of them do review the information. Doctors who have seen you for awhile may not know what to do for you-not because they don't want to help or because they are clueless but because autoimmune diseases and neuropathies can be very difficult to treat. It doesn't mean they don't hear how you are suffering or that they don't want to help. Are there some bad docs out there. Sure. But it is unfair to lump them all together.

I was a medical social worker for many years before I had to stop working. My experience has been that the caring doctors far outweigh the uncaring ones. But they don't have all the answers. And when they can't help it frustrates them too. ( not the same as for the patient of course). Please cut them some slack so you can let them help you.

One other question- is your neurologist a generalist or does he specialize in neuropathy? If you haven't seen a sub-specialist I think it is time to do so. I see a great one in Hershey but I hesitate to recommend him if you are not ready to give him a fair chance, answer his questions and go through any testing he would suggest.

I am pulling for you.
If they dont kow what to do,, why do they continue to prescribe stuff that poisons us,, if you dont know what to do,, get out that rolodex of numbers and find someone that does,, No,, I dont hate the whole profession,, I hate the arrogant ones who dont let you talk,, and this after waiting weeks to see them,, I hate the ones that listen to you and then go completely in the opposite directions as if they didnt hear a word you said,, they sit tehre like a dam bobblehead,, nodding there heads,, but not really listening, I;ve seen my charts,, I have seen the entry of somotoform disorder,, I have seen the entrys of depression and anxiety,, I know dam well once they see that entry your done for,, ya I;ll continue to fight,, but it wont be with the enthusiem I had before,, they have worse me down,,
  When my Neuro called me and told me he has a good idea what was wrong,, after the trip to Mayo,, I thought this is it,, my sister took me and for a full hour all I heard was how amazed Ihad to be at going to Mayo,, he compared it to a anthill,, everyone scurrying around,, things getting done,, and the whole time I kept saying,, Doc,, my arms are getting worse,,, I must have said it 5 times,,, my sister told him also,, but he just kept taking about Mayo and the doctors he knew there,,
  The neuro I saw out there,,, now she was nice, but I knew I was ascrewed when she told me that the punch biopsy they took in Pittsburgh that found teh SFN was probably taken from a allready scarred area,, possibly from a previous injury,, WHAT,, ?????,,, so I knew allready I just drove 900 miles for pretty much nothing,,, Mayo was good,, but I came away with no answers and a worsening condition,,

  Ya i;ll go to a pain clinic,, I guess I;ll have to find a way to get there,,, and I did call the local hospital for pain clinics in the area,, the girl gave me three numbers,, one was a number for a poditrist,, (i;m not lying),,, one was disconnected,, and the other was for a group of anestheologist,, ,, so you see my being cynical,,,
 so I really have no pain clinic yet,, I have no advocate,,, yes Irish,, my family really wants nothing to do with me anymore,, my wife is happy to go to work to get away from me,, my kids have moved out,, they call a few times a week,, they want nothing to do with dad,, they dont know what to do either,,, so this is what I get for 30 years of taking care of everyone of there needs,, when mom was to busy doing other things to go to ball games,, I watched the house almost get taken from us,, I stepped in and saved that,, and she walked away thinking,, well My husband has everything under control,, so no sesne me worrying about anything,, he;ll fix it,, alwyas has,,, I never let themm grow up,, andnow I am aying for it,,, thanks all
Title: Re: I need some guidance
Post by: anita on July 23, 2010, 09:44:13 AM
Navydad,

Give that group of anesthesiologists a call.  That's the pain clinic.  They are the masters of pain relief!!!  Anesthesiologists can do nerve blocks and other things to help you.  That's exactly who you need.  Give it a try.
Title: Re: I need some guidance
Post by: navydad on July 23, 2010, 11:22:10 AM
I did call them,, they didnt have a clue what I was talking about,, they only followed up on post surgical patients,, try to remember that I live in a area where your not allowed to be sick,, and you just suck it up
Title: Re: I need some guidance
Post by: rnathans on July 23, 2010, 11:36:18 AM
Well I would be pretty ticked off at your neuro too going on and on about Mayo instead of addressing your needs. That is not empathic or helpful. It sounds like part of the problem may be that you live in an area that lacks top notch doctors. You are in a rural area right?

As to why do the doctors put toxins into our system if they don't help- they do it because sometimes these toxins do help and are the only thing they have left to try. I was on heavy duty infusions of cytoxan (the name says it all) for 2 one year periods when my gastroparesis was really bad. I was lucky that it helped me but there was no guarantee that it would.

If this neuro has run out of things to try it may be time to see another one.

Hang n there.
Title: Re: I need some guidance
Post by: navydad on July 23, 2010, 01:23:48 PM
At first I was being treated in a rural seting,, without finding anything, they fell back to the Alamo Dx. Its all in your head,, then was sent to the Cutting edge Medical capital of the universe according to there commercials,, UPMC in pittsburgh,, saw a few helpfull sympathetic doctors,, but they released me to other doctors that I found out later had a vested interest in the referrals,,, it wasent long before I was being given poisons,, un needed surgerys that I grasped at for relief, No,, I am not treating locally anymore, in fact the Neuro I am seeing is on the board of directors of some very well known boards that I wont name here,,but some of his articles have referred to SS,,
Title: Re: I need some guidance
Post by: irish on July 23, 2010, 02:25:33 PM
navydad, There is no getting around it---chronic illness can destroy families. It is something that happens and many times there is nothing that can be done. Life is not fair----never has been and never will be. The bottom line is that you need to find relief.

I have somatoform diagnosis on my chart plus I have psychiatric disorder that was added also and expanded upon making me look really unhinged--- and it just goes on and on. I have been insulted by the supposedly best of them and even with my hubby in the room with me. I wrote an 8 page letter to one of the bigger institutions explaining to them all the stupid things that they had charted.---things like "see a psychiatrist every month" which is not true. I told them I saw a psych every 4 months or so for a med recheck. Yeah, they don't listen---at least most of them don't. That is why I spent about10 years going to the doctor and it would be about 6-8 times a month or so. Sometimes less, but always just a constant battle to look for help. I worked part time and my employer asked me if I had any money left at the end of the month after doctoring. I told him "not much" and I told him I would not quit until I found out what was wrong.

All the people I worked with knew I was sick and could see how ill I was but I am a tough old broad and kept on going. Hubby and I put on so many medical miles every year that our tax man couldn't believe it. He had never seen anything like it. I told him desperation does that to you. Sort of ruined our old age financially and socially that is for sure.

I have been hanging my head in the bathroom sink for 10 years getting rid of infections and ruptured abscesses, etc. Mucus issues are daily and constant for me. We should have taken pictures but didn't think of it then. I knew that I had an abscess in the back of my throat cause I would rattle when I breathed and I could feel the swelling. I was to ER several times at important hospitals. I didn't look sick, I looked too healthy, nothing wrong with her. I finally got out an old small blade jacknife of hubby's and sterilized it as best be with betadine, etc. I got the cotton gauze squares ready and the inside of a ball point pen. This was my little packet of tools that I was going to use to perform a tracheotomy on myself if I got so bad that I couldn't breathe.

This sounds far fetched, but I am a RN and I got on line and reviewed the anatomy and landmarks for this procedure. I told my hubby that we lived so far from town that I would be dead or have brain damage by the time the ambulance got here. I was so mad about the whole thing and I thought there is no way I was going to die by suffocating. I knew it was a high possibility and I was mentally prepared to do whatever it took to save my life.

Ended up that I did rupture a big abscess of orange drainage and I didn't have to do anything---but I would have done the trach on myself had I needed to as I was psyched for it. I told a couple of docs that I was not going to die because someone didn't believe what I told them. I also told them that if a missionary can perform an appendectomy on themself in the jungle then I could do the %#&* trach.

Yeah, life can suck. I called one clinic many years ago for a referral to an ENT. This doc (who I knew and worked with) refused to refer me. I told the nurse to tell him to "stick it where the sun doesn't shine". She was just horrified that I had said that. I got on the phone to the cities and called one of the big hospitals and got the number of an ENT and saw him in 2 days. Guess what, I was right, I did have issues with that ear that the other doc had treated!!! It was full of pus and I was losing my hearing. I stopped at my clinic on the way home and told the nurse to tell him that my ear was better now since the ear drum had been lanced, infection suctioned out and tube inserted in my ear drum..

I had to drive 80 miles one way to get treatment cause my dumb egotistical doc wouldn't listen to me. Now, I could go on and on cause my story, and everyone elses on this site, is never ending. It is fraught with stuff that shouldn't happen but does. I have been instilling antibiotics in my nose every day for 5 months now and just saw ENT this week. He did cultures that were so deep into my nasophaynx that I thought they would hit bottom and it hurt. Cultured both sides and did a bunch of them to see if they can find out what is growing now. Always something, never ends, but it is my life and I am left with it. I am up til 3-4AM every night again lately because of my mucus issues. It is old, I am sick of it. Will it ever change---I seriously doubt it. It will kill me plus I worry about spreading stuff to my grandkids. But I can't change it and must make the best of it.

So navydad, get over it and get out there and do what you need to do. We can whine all we want but it ain't gonna do anything but make us miserable. Attitude is the only thing that separates the men from the boys in everything we do. Find yourself a different ENT if you aren't getting what you think you need. Sounds like you could have something going on there that needs to be treated. I kept telling you that if you had some abnormal white blood counts and a diagnosis of immune deficiency to get this addressed. If you have immune issues you will always have issues with your sinuses if you don't get IVIG. IVIG is one of the prime treatments for some of the immune deficienced. I know that you had a couple sessions of the IVIG and it needs to be done on a timely basis to get things under control. It takes time and most of us have nothing but time now.There is not an overnight cure and there never will be.

If your neurologist isn't helping you then find another one. It doesn't take long to see the writing on the wall with some of these guys. Your complaints never change and never will if you don't take the bull by the horn. First off get an antidepressant and get your body and mind on the right track. Seek out people that can help you. Find some spiritual support and don't overload your family with all of this. They cannot fix it.

My hubby and I are both ill. We each wander around in our own little world at times. We both admit that we get sick of being sick ourselves and having to live with someone who is sick. We both know that the other person has to totally remove themselves mentally from the health issues and do different things---go different ways, etc. We can't stand the burden of all the medical issues at our house and have to just sort of zone out at times to keep our sanity. The relatives can develop horrible guilt because they can't help their spouse. Some leave the marriage, some drink, some quit sommunnicating. Each marriage has to learn how to deal with these issues. If we don't have the answers we have to find someone to help us
.
So just get on with it and find the help you need and we will all be here for you. Irish ;D
Title: Re: I need some guidance
Post by: gurs on July 24, 2010, 04:47:56 AM
You cant blame the doctors in a way....what else can they do? .they need more research and funding for these autoimmune diseases. Just because some are not fatal, they continue
 not to see how debilitating they are, just not with pain, but with everything else. I would be happy just to have some joint pain etc, but like alot of you, I suffer horribly.
Alot of MS symptoms. Feel toxic and just sick all the time and cant make it out of bed much anymore. Now I have major hormone problems and losing all my hair all over and look like an 80 year old woman and im only 46? lovely!!!!
I cant take any pain meds because they make my anxiety worse, or zone me out totally..and, they also cause me to be more dry if possible..now what?

Hang in there ok...dont give up
Title: Re: I need some guidance
Post by: Carolina on July 24, 2010, 06:09:04 AM

Dearest Navydad,

We all need some guidance, but I'm not sure there's much to be had.  This is sort of a "do-it-yourself" project, like life itself.

I'm at the beginning of where you are, Navydad, and only have a slight idea of what's ahead.  Your posts give me some idea, tho'.

Right now Cymbalta, Oxcarbezapine and Aleve give me some relief, and of COURSE, I'm just starting.  

Today, for example,  is the first day my arms ached as well as having pins and needles and tingling and burning.   And I also notice them during the day now, not just at night, sigh.

I too have terrible sinus drainage, getting worse now, and of COURSE a constant sinus headache.  It was my ORTHOPEDIST who said, "oh yeah, that's probably from your Sjogren's!"  Go figure.  Of course I immediately realized he was right.

I pay very close attention to what you're going through, Navydad.   You know you have my concern and caring, you have that from all of us, I think.

I wish I could make things better.  What you need, and don't have, is a connection to a caring and committed professional that you trust and feel comfortable with.  Not because she or he will make things all right, but because you will feel treated and respected as an entire person and as yourself as an individual.

We all need that.   I'm still looking for that, but I"m not so sure I will find it.  

Here, in this forum, we do get some of what we need from each other, I think.

Keep keeping us posted!

Kisses

Carolina












Title: Re: I need some guidance
Post by: Sarah on July 24, 2010, 07:19:07 AM
I am so sorry for all your pain and heartache.  I once had pain so bad all I did was cry.  No family, no friends, feeling so alone in the world.  Going to a lot of doctors only added to the feelings of dispair.  I went to Mayo about my pain and they were of no help, but a male nurse there said "Your mind is a strong instrument in healing and I have seen many people overcome great obstacles."  That stuck with me and I decided to use my mind as much as possible.  I read books on pain and encouragement and each one had a little tidbit to help.  I repeated the phrase over and over "Every day in every way, I am getting better and better."  This came from a book called "The Will To Live."  I also memorized the phrases "The light of God surrounds me, the love of God enfolds me, wherever I am, God is there."  These things calmed my mind.  I tried exercise - a very little at a time - sitting in a chair - raising my arms, using a stretch band (you can buy at K-mart or Walmart), then I would walk in the house just a few feet at a time and increase it daily.  I would put calming music on and use tapes that were very calming.  I kept thinking what the male nurse told me - your mind is very powerful.  Little by little I started to feel a bit better.  I watched funny CDs and started to laugh.  I realized I had to change my attitude and mind as certainly doctors did not do it.  I changed my diet - putting only good food into my body - fruits, vegetables.  All this I had to do myself and it was not easy to get up and do these things.  I started to view my body as a temple and that God wanted me to heal.  It took years.  I can't tell you how much dispair I was in but I wanted to regain the will to live and be happy again.  I still use these methods whenever something happens or pain starts up again.  I was told I had permanent nerve damage in both my insides (from terrible surgery) and my jaw (again surgery gone awry).  Good luck to you, Navydad, and we all send you our love.  I have my dog who loves me unconditionally, and I have  God who loves me.  I list the good things in my life.  I also recommend reading 12 step programs, even though you might not drink or be with someone who drinks, the information in the 12 step is so calming to my mind.  It helps me to detach from things that upset me.  Love, Sarah
Title: Re: I need some guidance
Post by: irish on July 24, 2010, 11:29:19 AM
Sarah, You are a further testimony of what our mind can do. Add in an enormous amount of faith and endurance and anything is possible. We may not be "normal" or whatever that is, but I truly believe that those of us who have suffered and learned from the experience have received a great gift. Thank you so much for that inspiring post--it offers much to those of us who suffer on a daily basis.

We have learned that life is truly precious and even is spite of our suffering we are still able to bring something to this life. If all we can do is to hold our grandchild and love them that is ,indeed, a good reason to still be on this earth.Irish ;D
Title: Re: I need some guidance
Post by: eyeamdry on July 24, 2010, 01:54:23 PM
I had a dr on the phone onetime asking whether I should bring my 80+ y/o father in law to ER as he claimed he was having a stroke.  He had been in that drs office earlier in the day about the same problem.  It was now midnight and the old man was insisting and I asked the dr what to do.  He said he didn't know what I should do.  I said, "well, dr. you are an A--H--E," hung up on him.  I called my husband who was working to meet me at the hospital.  I managed to get the old man in the car and head for the hospital.  It was raining so hard I could hardly see.  My father in law said, "I think I'll have a cigarette, it might make me feel better."  I thought to myself, you may as well have 12 because at this point it doesn't matter.

The bottom line was that my FIL was indeed in the process of having a stroke.  He ended up permanently paralyzed on one side of his body.  This was about 20 years ago and they didn't have all of the new stuff.  My FIL never did regain movement in his left side and spent the last 6 years of his life in a nursing home. I should have gone to that dr personally and smacked him in the kisser.
Title: Re: I need some guidance
Post by: navydad on July 24, 2010, 04:42:59 PM
I had a dr on the phone onetime asking whether I should bring my 80+ y/o father in law to ER as he claimed he was having a stroke.  He had been in that drs office earlier in the day about the same problem.  It was now midnight and the old man was insisting and I asked the dr what to do.  He said he didn't know what I should do.  I said, "well, dr. you are an A--H--E," hung up on him.  I called my husband who was working to meet me at the hospital.  I managed to get the old man in the car and head for the hospital.  It was raining so hard I could hardly see.  My father in law said, "I think I'll have a cigarette, it might make me feel better."  I thought to myself, you may as well have 12 because at this point it doesn't matter.

The bottom line was that my FIL was indeed in the process of having a stroke.  He ended up permanently paralyzed on one side of his body.  This was about 20 years ago and they didn't have all of the new stuff.  My FIL never did regain movement in his left side and spent the last 6 years of his life in a nursing home. I should have gone to that dr personally and smacked him in the kisser.
Shame you didnt smack the guy,, I hope there all resting today after having a great saturday with there friends and familys while we are left to try and survive another day,, I dont find joy in much of anything,, even going outside today just brought burning to my feet,, nothing stops that,, sons wanted to take me mini golfing,, i had to beg off,, I dont like burning,, Id ont like my arms and hands hurting som uch I want to cry,,, how do you find joy from pain,, pain that neve lets up,, ya,, I kow,, get theee to a pain clinic,, I guess being a zombie is better then living in a world of hurt
Title: Re: I need some guidance
Post by: irish on July 24, 2010, 09:37:19 PM
navydad, I guess I have finally reached the end of my tether. I try, we all try, and you apparently don't understand what we are saying. How can we say it any different. Have a good week. Irish
Title: Re: I need some guidance
Post by: eyeamdry on July 24, 2010, 10:07:33 PM
Navydad, we are all in the same boat as you are, in one form or another.  We wouldn't be here otherwise.  I need two knee replacements, one is to fix an old one, plus surgery on my big toe and that's just the beginning.  When I had breast cancer was really the scariest time for me.  That was 6 months after Sjogrens dignosis.  ONCE YOU HAVE CANCER, YOU ALWAYS FEAR IT COMING BACK.

The reason I didn't "smack" the doc was because I was on the phone with him.  I don't find joy in much either as it becomes harder to walk.  But, I can watch a favorite tv show.  I can eat a favorite snack.  Most people like to hold or see their grandchildren.  I can't do that.  I have none and never will have any.  That's all my friends talk about.  Does it bother me?  Not really.  I can remember on one occasion I let my mind wander..  I do get tired OF LISTENING TO THEM GO ON AND ON ABOUT HOW ADORABLE AND SMART their gkids are.  But after a couple of times, I suggest changing the subject. 

The decision to go to the pain clinic is up to you.  It's possible you will go to the clinic and still complain.  What if they can help and you never find out?
If you find out they can't help, you are no worse off.  Lucy
Title: Re: I need some guidance
Post by: Suzie on July 25, 2010, 05:55:34 AM
Anaesthetists are the BEST pain experts. I wanted to kiss mine, when he gave me an epidural after 24 hours of a 36 hours back-ache labour.

I'd have shot myself if I'd had a gun, seriously. Then...bliss!

Seriously, these guys know their drugs.

Title: Re: I need some guidance
Post by: navydad on July 25, 2010, 10:14:19 AM
navydad, I guess I have finally reached the end of my tether. I try, we all try, and you apparently don't understand what we are saying. How can we say it any different. Have a good week. Irish
you have a good week too,,
Title: Re: I need some guidance
Post by: navydad on July 25, 2010, 10:21:51 AM
Again, thank you for all your replys,, its alittle better today I was actually able to pound a nail before I dropped the hammer in pain,, better then yesterday when I couldnt even pick it up,, again thanks all for your replys and good luck to all of you,, I hope your battles are small and your gains are big, thanks for everything
Title: Re: I need some guidance
Post by: inga on July 25, 2010, 01:43:54 PM
If your hands hurt badly, see a hand specialist....you may have severe hand arthritis and that can be treated with a tendon transfer....your radial nerve is also in the region and if the arthritis is bad enough, it hits that nerve and the pain is truly unbearable.  I have opted for this surgery, despite having SFN.

On your sinuses, do you have MRSA?  OR perhaps you need to be on rotating antibiotics, including antifungals....also guiafenasin to thin those secretions.

As far as pain goes, there are several kinds of drug familes that are used, and all of them have downsides......opiates and narcotics can constipate, but they are generally effective.  Antiseizure meds do mess with your cognition but, it beats being a downer due to pain.

I think  you should get into a physical rehab program...it hurts, yes, but, you will build some muscle, even with the neuropathy.

As far as family goes, I don't discuss my disease at all with my kids....THEIR worst fear is that this could be genetic.....watching an ill parent and wondering if this is what is in store for them is not easy.  They want to see you enjoy life.   Can you take a trip, even a nearby one for a week and then tell them about the trip and the fun that was?  That may be better than trying to discuss your disease.....becuz, no one truly understands...they just don't.  My kids want to see me happy, and if I want to see them, I better darn well be happy.
Title: Re: I need some guidance
Post by: ohiolady on July 25, 2010, 03:05:43 PM
I think Inga has a great idea about our kids.  The last four years have been one thing after another for me, including a scare with cancer.  And, Lucy is right, when you've had cancer the fear of it returning never goes away, especially when your doctor reminds you this can happen.  I do push it out of my mind until the next scan.  But, I try to be up for my kids because they just can't deal with mom being down.  I've always been there for them and the strong one and I need to conitinue to be mom.  Also, I try to not burden my friends with my illness either.  I try to look around and see that someone always has it worse than me.  It really does help to develop this perspective.

Anna