VERY frightened.

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Ann Ireland
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Date Joined Apr 2006
Total Posts : 511
   Posted 2/10/2008 12:50 PM (GMT -6)   
I see a neuro on Friday.
I have not been at all well and have been reading up on Myositis, have I spelt that right.
My muscles are agony, all of em. the muscle wasting on the hands and wrists are clearly visable.
I have a very dry cough, a buzz in my head and I am shattered exhausted ALL the time.
I fear of having one of the Myositis, especially the one that does not respond to treatment, but I believe this is a rare type UM.
None of the Myositis mention chorea nor dystonia, which has gone off the richter scale now.
I wake in bloody agony, every muscle aches.
I am getting weaker and the breathing is affected.
I read that with the rare myositis you are dead in four years after diagnosis, more or less!
I want to live!
I know I am seriously ill, but have always been afraid of dying.
I know too I am doing far too much, more than far too much.
If I told you of a typical day, you'd all be horrified.
On a better note, I have finally put together my final Arts Report for the Award I got. It should have been submitted about a year ago! It is all ready for posting and a degree final year student at the Art College says she is very impressed with it.
I am trying to be positive, but the depression too is fierce, I wake crying most mornings and I seem too, to have an explosive angry aggression about my condition and people get it full face.
Please help me and reassure me if you can.
I know I am panicking, I AM PANICKING!!!
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 2/10/2008 1:36 PM (GMT -6)   
Deep breath Ann . . . Friday is still a long ways off . . . but you can do this. The dx will NOT change anything. Whatever your disease is, IT IS ALREADY. What a dx WILL do is get you proper help

Tie a knot in that rope and hang on. Anxious thoughts rob you of precious energy and take away even more than the disease does.

Some hot tea for you!!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

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UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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Date Joined Jul 2005
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   Posted 2/10/2008 2:02 PM (GMT -6)   
Ann, I totally agree with Rosie. I know all of this is scary and sometimes I think the internet can be a curse because we can find all kinds of serious diseases that we have symptoms of and end up scaring ourselves half to death. Like Rosie said, please try to not give into the fear - at this point you really don't know exactly what you are dealing with so, try not to waste too much precious energy worrying (although I know it's hard not to when you feel so sick). One thing that having a chronic illness has done for me is to make me appreciate the blessing that each day is - everyday that I am here to be with my children, family, and friends is a gift. Yes, I have anxiety at times, but I also try really hard to focus on some positive things too even if it seems like something small.

My mom has a saying that I love and it is: "don't buy trouble" Like Rosie said, so many of us have very limited energy and any energy we have is so precious.

Hang in there and I'm hoping the doctor at your appointment can give you some answers and help to ease some of your fears. Maybe writing down a list of your fears to go over with your doctor might help - he can go through them. Sometimes writing things out can help and at least get them out of your head.

Take care and maybe try to do something you enjoy to take your mind off your worries. Distraction can be great medicine :)
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 2/10/2008 3:09 PM (GMT -6)   
Before my husband read about lupus and pointed out I had so many of the problems associated with it I was sure what ever it was that was wrong with me was killing me and that it was speeding up as time passed. Whatever is wrong has been wrong for a while and at least your doctors see something is wrong. I was getting weaker and sicker and the doctors I was seeing refused to see what was happening to me. Once my husband showed me that it looked an awful lot like lupus- and he did major research first knowing how scared I was and that my family history is really bad for people dying- I realized that so long as I could find a doctor who would listen and do something I had a fighting chance. I had tried researching my symptoms on my own online and what I found there were some really scary problems. I made myself a promise there and then, that I would not research any diseases until I had a diagnosis because all my own research did was scare the begezus out of me.

Besides which being scared, worried, or stressed takes too much energy. Instead focus on accepting that you need a good doctor who is willing to look for what is wrong instead of doctors who say we don't know and thus give up. Because you never know, it is possible that all your problems are caused by something they can fix. Hold out the hope that what is wrong can be fixed, because thinking you are dying is a horrid place to be. I know from experience. I have even come darned close to dying a couple times, but thankfully I did not allow myself to become fatalistic and give up because my rheumy saved my life more than once since I started seeing her. Now I may have several serious chronic conditions but I also have hope. Treatment has made such a difference in my life. I used to have so little strength and energy that I literally could not take care of myself, I could barely go from bed to bathroom. Today I am not allowed to do much because of the baby, but I was beginning to walk farther and farther without even a cane and was finally getting my life back. I know that you are in a worse place than even I was because a lot of what is happening you can visably see, for me it wasn't always readily apparent by looking at me just how weak I had become. I came darned close to being a complete invalid though because of the amount of pain that I was in. Even sitting was torture. The pain may not be fully controlled- they can't do that until they figure out what is causing the inflammation in my spine but thanks to first Humira and then Enbrel I can handle it better.

What I am trying to say is that no matter how dark it appears right now there is always hope that the right doctor is the one you will see next and that that person will figure out most if not all of what is wrong and that the treatment will work and give you your life back, if not exactly the same as before you got sick then at least one you can accept and be happy with. Please do not allow yourself to become mired in all the worst case senerios you will find if you research without anyone knowing what is wrong. Make the appointment to see the specialists in London. Make arrangements to get there and insist you be seen as quickly as possible, explaining how bad your situation has become. See the neurologist and see what is said there and move on from there. Hope is always available because darn it all doctors are not bloody Gods. They also make mistakes. So never allow yourself to give up and worry yourself sicker. Worrying is pointless and allowing this to stress you out will only make you sicker. What you need right now is energy to fight.

BTW I got really angry before finally being dxed, I basically ripped the head off of anyone who tried to say maybe it was all in my head or if I only did this I would be better. What I especially hated were people who said I was feeling like I was because I was fat and lazy. I have never been lazy, I always pulled my weight and that of anyone else who couldn't pull their own right up until I got so bad that I wanted to die. Yes, things got bad enough, especially the pain, that I wanted to die and yet my intellect wouldn't stand for suicide because my mind still worked even if my body was worse than useless. So when people implied I was imagining my illness, making it up, or that if I just did more I would get better I went into a verbal rage. If I could have throttled them I probably would have. My poor husband had to watch me fall apart, which I think was harder than it was for me to experience it first hand. When I gave in to my own fears it terrified him so consider those who love you and are watching this happen, if you allow fear to rule you how will they feel? What will it do to them? Ask yourself those questions if you find that nothing else helps you let go of your fears and fight this thing. Everyone matters to someone, and you have a twin which means you matter very much to her.

Sorry to ramble, I am having trouble expressing what I have been trying to say as clearly and concisely as I would like.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia

lifesworth living
Regular Member

Date Joined Jan 2008
Total Posts : 28
   Posted 2/10/2008 9:05 PM (GMT -6)   
ann, hi hope you are feeling better. i believe everyone has given you some good advice. i would just like to say that each day as you awake you are beginning the first day of the rest of your life, no one knows there departing day, i believe that being as informed as possible is the best way to face whatever battles we must face in life. i have also found that keeping a positive attitude helps me be strong, i to have been afraid of dying everyone most likely thinks about it at times. i know being sick only makes it seem more real and scary. but i believe we will not face death alone, and were not dead till were dead, i know it may be hard to do sometimes, it is for me also, find some good in each day and be thankful for it. life realy is worth living and by living i mean to the best of our abilities to love and be loved and be as positive as possible. sheshe

Ann Ireland
Veteran Member

Date Joined Apr 2006
Total Posts : 511
   Posted 2/11/2008 1:08 AM (GMT -6)   
I want to thank each and everyone of you for responding. I DO appreciate it VERY much. It is so hard for me. I do agree that if I actually knew what is wrong it will go a long way to helping me cope. Its the not knowing. And yes, the internet is a scary medium!!! I just feel so ill, thats all and all I am being given at present is painkillers which dont work and I am on a very high dose.
Again I woke with the awful buzzing in my head, all the left side of my head. I have felt it has been a result of doing FAR too much. The buzzing is always worse when I do too much.
College is proving too stressful with a tutor from HELL.
I also feel that a pleasant occupation and pleasant folk around would go a long way too. But of the latter virtually no one calls and I dont feel 'love' anywhere.
My twin, I find, at times very worrying for she is constantly ringing and very demanding and coming up with wild ideas like buying an eight berth caravan in Devon!!! We dont KNOW eight people between us,I am in a diff country to DEVON and she hopes to be too in the not too distant future..
I am always having to get her to think clearly and stay on track with her life. I find her actually 'sickeningly' worrying.
I just want to do my photography, but all this health stuff gets in the way.
I actually have no regime, its all contantly health, health health and keeping one step ahead of the pose.
I have health crisis most days, if its not the severe pain with gum disease, to having to go to be measured for special shoes (I have deformed feet! Ah, did I tell you that!!!), to traveling to have blood tests. Its just goes on and on and on.
Family, a very large one do nothing and never visit, ever, or hardly ever. And they do nothing of a practical nature.
Oh, at 6am I am moaning already.
I wake in agony and with profound depression. I DO know the depression eases off a bit as the morning deepens.
I feel crape every morning and have to 'reinvent' the thought processes as the hours pass, by mid afternoon, I sometimes have it right!!!
Sorry for moaning.
I spent the weekend shifting furniture and hundreds of potted plants and all my paintings, again hundreds out of the way of all the windows as the workmen are coming to hack away around all the windows to put new ones in. I live in social housing so have no choice and its like the artic here anyway with the rattling of everythibng when the wind blows.
It doesnt help that they bought windows too big and thus the hacking AND they wont be compensating me for the damage nor do any repainting of the walls I painted over the past two years.
I have seen the other apartments in mid-work, it has looked like bomb sites, next few days will not be pleasant.
Dog has gone to the doggie hotel as I was worried she'd freak.
I'll be the one freaking!
I am sorry, I am sure I will be more cheerful when this 'blip' is over, AND I get some idea of what may be happening.
Thanks again, and I rEALLY DO appreciate it very much.
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream

Regular Member

Date Joined Oct 2003
Total Posts : 495
   Posted 2/11/2008 7:37 PM (GMT -6)   
Ann, I am sorry that you are going through a hard time. Five years ago I went through some of the same thing. I had to see all kinds of doctors and tests. One day it will be better, take care of yourself...Blessings always
Enjoy what you can today and leave the rest for another day.

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