Author Topic: I need some guidance  (Read 6672 times)

navydad

  • Guest
I need some guidance
« 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

gphx

  • Hero Member
  • *****
  • Posts: 526
Re: I need some guidance
« Reply #1 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.
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.

bob212

  • Guest
Re: I need some guidance
« Reply #2 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

gphx

  • Hero Member
  • *****
  • Posts: 526
Re: I need some guidance
« Reply #3 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.
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.

hnybny91

  • Guest
Re: I need some guidance
« Reply #4 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}}}}}

LizPetillo

  • Guest
Re: I need some guidance
« Reply #5 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.
 

anita

  • Hero Member
  • *****
  • Posts: 2435
Re: I need some guidance
« Reply #6 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
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Suzy

  • Guest
Re: I need some guidance
« Reply #7 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

navydad

  • Guest
Re: I need some guidance
« Reply #8 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,

inga

  • Guest
Re: I need some guidance
« Reply #9 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.

Dolly Dimples

  • Hero Member
  • *****
  • Posts: 1546
Re: I need some guidance
« Reply #10 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
                                           

gphx

  • Hero Member
  • *****
  • Posts: 526
Re: I need some guidance
« Reply #11 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.
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.

inga

  • Guest
Re: I need some guidance
« Reply #12 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.


sjogrens53

  • Guest
Re: I need some guidance
« Reply #13 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.


irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13409
Re: I need some guidance
« Reply #14 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