Sick and tired of being sick and tired

[Sickgrandma]

I was wondering if anyone out there in cyber space could help me. For the past 7 yrs I have had 24 hr a day headaches and neck and shoulder pain. Recently I have started having dizzy spells that leave me a mess, I need to sleep or lay flat to help releive this. I also 3 weeks ago had a sudden onset of closed angle glaucoma, which I had emergency laser surgery for. I have seen neurologist, neuro surgeon for spondolytis and am awaiting an appointment with an endocrinologist. The opthamoligist that did the laser surgery sent me for a MRI on orbits and found that I have Thyroid Eye disease, possible graves disease. Now my problem is after seeing all these doctors I am still unable to do anything but lay resting most of the day, with short periods of moving about or getting on the computer in search of help, I have been given no medication or suggestions on how to releive the chronic headaches or pain in my neck and shoulders.... Each appointment leaves me drained and stressed to the limit as all the doctors so far just seem to be passing the buck onto the next specialist. Blood tests reveal negative ana but positive ena, with esr's elevated. also low vitamin d.
I had a wonderful job and have a disabled son with Friedreichs Ataxia whom I care for as well as a beautiful grandson I have no energy to play with. Due to my eye problems and dizzy spells I am unable to drive at present and must rely on friends to take me to all appointments. My marriage is failing due to my constant ill health and I am so frustrated... I just want some answers and at least someone to tell me what I can do to relieve the pain until all tests are finalised and possibly a diagnosis is made.
Anyone have any ideas...I am at my wits end.
Regards
Sickgrandma.

[Sickgrandma]

Hi Cat,
Firstly it is great in Australia although I have only been to the US once approx 10 yrs ago. I have a 28 yr old son with Friedreichs Ataxia and he got granted a starlight wish and of course his wish was to go to Disneyland. So the whole family, 4 of us got a 2 week trip to the USA and went to many many places around Aneheim.. Disneyland, Knotts Berry Farm, Universal Studios, we also took the kids to Mexico... Was a great trip but was glad to get home.... No place like Home especially when it's Australia...  At present it is summerand we would usually be having temperatures in the high 30's to low 40's Celcius by now but tis year we are having a very mild summer with heaps of rain and storms at present. But summer did only start on the 1st December so the high hot and humid temps can still come with avengence... But it really is a beautiful country and we are very lucky to live here.
Now I saw the Endo today and he was of the opinion that I dont have graves disease... he said the changes in my eyes are not strictly along the lines of graves but he is doing many blood tests ( thyroid) to check and aslso a 24 hr urine test... So hopefully they will show something. He said I definitely have many symptoms of Over active thyroid but did not feel he should give me any medication until all test are in... So it is still the waiting game...but in saying that he was a very good and kind doctor that had no problems listening and asked many questions... As for sleep well I can relate I sit up half the night doing craft things or watching Television as I too dont sleep well. I have been given valium to try to assist in the sleep department and pain department as well but so far that has not worked for me either... Anyway I think I too have the pain problems you have as I suffer 24/7 from chronic headaches and most times unbearable pain in neck and shoulders...so I can most definitely relate to you...I was interested to hear you have trouble with pain meds as I do also...I have heat packs and cold packs as well...My husband reckons my heat pack is closer to me than him...lol
Anyway I must get going as I have been up since 4am and I am going to head to a hot bath and some relaxation music in the hope that it may make me sleepy..
Good to hear from you again...and hope you can get some relief and sleep.
till next time yours kindly
Sickgrandma

[kitonthemoon]

Hi,  I sure know how it is being 'sick and tired of being sick and tired'......I've had Chronic Fatigue Immune Dysfunction Syndrome (aka Myalgic ecepholopathy), Fibromyalgia Syndrome, Addison Disease......the list gets longer after 15 yrs of being homebound, often bedridden.

I try to remind myself that being sick is bad enough, hit by the blues because of it makes it even worse.  I refuse to allow my illness affect me emotionally if I can ever help it.

There're so many illness out there, their symptoms overlaps each other.  So, diagnosis gets more difficult each day.  Besides, there're not a whole lot of well informated doctors we can choose from. Isn't it?

If you have so much nerve pain, Cat33, have your doctor explore the possibility of Fibro, CFIDS/ME, MS, etc.???  

Sickgram......be very careful with anti-depressant.  There're many side effects..sometimes, even rage and suicidal thoughts.  They can also makes your gain weight.  

Wehn I have trouble sleeping.......I usually gets up and do some yoga stretching and calm my mind.
I also makes sure that I don't watch/read anything that will excite my brian.   These are not sure cure remedy, but they sure help me lots.

Hope that you have a good holiday season......
KitOnThe Moon

[hava]

The anulom vilom exercise I described will help sleep as well.Try it and you will know.

[cat33]

      I'm in the U.S.    It doesn't matter where we live as long as we can help each other. What's it like in Australia? I was recently given antidepressents because I couldn't get any sleep. Well I don't get my bouts of crying anymore. But here I am at3:30 am. Evedently they don't work for sleep. Please let me know how your appointment with endo, goes. I'm in constant pain everywhere especially my lower back and knees. I can't take any kind of pain medication because it affects my liver. All I can use are hot packs and cold packs. Hoping you are not as sever as I am. good luck cat

[Sickgrandma]

Thankyou hava I will try these tips you have given me.. cat33- my grandson has just turned 6 yrs old...He has just come back from an 8 month trip around Australia. My daughter packed up and they headed off for the trip of a life time.. So not being able to see him much now is very hard.I went to see a local GP yesterday she used to be my local doctor but has been away for 2 yrs overseas. She has now given me antidepressants and valium to help me  cope until I see the endo and to try to help relax the tightness in my shoulders and neck. So at least she is doing something. Do you guys take anything like that for your symptoms. She told me she didnt think I was depressed but these antidepressants are also used for nerve pain so hopefully it will give me a little relief.
Are you guys in America or here in Australia?
Sickgrandma

[hava]

While you are waiting, this exercise will help you.
Anulom Vilom - Deep Breath-in through left nostril keeping right nostril closed
then - Breath-out through right nostril keeping left nostril closed
then -Deep Breath-in through right nostril keeping left nostril closed
then - Breath-out through left nostril keeping right nostril closed
and repeat this cycle for upto 30  minutes twice a day(maximum 60 min/day).
For spondolitis do this:
Rest your hands on shoulders, then make a circular motion with the elbows, clockwise and anticlockwise about 5 to 20 times.  

[cat33]

      My grandson is 3 how old is your's. I love both of my grandchildren so much. His sister is in first grade so we don's see her as often but he is here bright and early. Really glad you got and Endo to see you so quickly. Make sure if you have any papers of blood work or can get copies before  your appointment you take them along . They really go mostly by blood work. Good Luck and keep in touch. cat33

[Sickgrandma]

Well finally something happening, well a start anyways, the Endo receptionist rang today I have an appointment next Tuesday morning, so hopefully he will be able to make a start to helping me out. She asked if I had my CT scans and MRI's done of the brain and orbits, which I do, and she said not to forget to bring them along... So it is only Monday evening and I have everything out and ready for next week. I am also going to see an old doctor of mine tomorrow who has been away overseas for the past 2 yrs. She is finally back in practise about 40 mins away and is a wonderful understanding doctor who makes the time to chat and rally listen.. So hopefully she can help me to at least deal a little until I see the Endo next week... I have decided that today was a huge positive and I am going to try to keep the positive feelings going...
Thanks again for all your kind words as I said it helps to know others are either going through or have been through similar situations...
AS for your Grandson he sounds just like mine... I spoke to him today and he asked " Mummaa has the docors fixded you yet, can me come stay now?"
Breaks my heart when I have to say not yet Darlin... Oh well hopefully soon.
Thanks again
Sickgrandma

[cat33]

My grandson sees me go out the door and says "you going dater gan gramma" it seems as if I'm always at one Dr. or another. I am beginning to see the light at the end of the tunnel. Hope you are able to get an appointment soon. I tried  calling about 4 of them that either weren't taking patients or gave me an appointment for March or April. Then I found one that saw me the week after I called and she turned out to be one of the best on my initial list of endos. Let us know when you go and how everything went. It was sort of fast for me because I had all the tests she needed to look at since I had seen so many Dr.'s  prior to being sent to her. Good Luck cat33

[Sickgrandma]

Thankyou so much for your replies. At least it is better to be able to hear from people who understand. I rang the opthamoligist on Friday and told him I could wait no longer for the endo appointment. They are ringing me back tomorrow morning hopefully with an appointment this week.
I have never been a cryer but of late it seems that is all I do. So of course talking to the Doctor I burst into tears...he was very understanding and said he would get onto the endo and get things moving....So wish me luck...
Thanks again for your replies.
Sickgrandma

[cat33]

Be sure you make it to the endocrinologyst.I went last week and was told I had extremely low bone density which has caused ostioperosis and a loss of vitamine D and calcium. I am being scheduled for an infusion of zoledronic acid which help with the bone loss.             An endocrinologist also specializes in diabetis.and thyroid so she shoud be able to run the T4,a  T3 some people suggest that a TSH is good as well . good luck. and let us know your results.    
cat33

[renrah]

First off, (((((((((((((((hugs))))))))))))) I understand how you feel.
Please, oh please, talk to your doc about testing your tsh, Free T3 and T4 hormone levels.  In fact, you might request all of your hormones tested because I found out the my estrogen has some part in this whole equation, as well.  (it's what I had to do)  These are all for your thyroid and I would think they would need to know if you are hypothyroid.  
I know exactly how you feel, about feeling sick and tired of being sick and tired and called my doc & told him I was not only sick & tired of it all, but mad about it, too!
I've had a few times in which I could've sworn I had fybromyalgia with the muscle pain I've experienced.  Especially in the neck and shoulders.
Please ask your doc to request a full screening....I hope you're feeling much better, soon!  I'm waiting till I do, I'm hoping only 3 months till my Hashimoto's Thyroiditis is under control.  (crossing fingers!)