Myocardial Ischemia..

[Sandel]

Well hi there been awhile..

Last week I went for my MIBI testing (chemical tredmill test) in Victoria BC and I got my results back yesterday, aparently there is a problem with my heart.. an area that is not getting enouph oxygen I guess.. Ischemia.

It never ocured to me that they would actualy find anything.. My chest pain is very bad and it was just safer I guess for me to think that this is only RSD related, I was woried that it could possibly harm my heart though.. not sure the relationship between the two but I do know that the heart contains an awfle lot of sympathetic nerves.

So thoughts... I am numb today emotionaly.. just waiting on an apointment with the heart doc.. ohh and cancelled a root cannel apointment for today (pwew) my tooth that is threatening to erupt.. I realy need a vacation from my life. The dentist by the way and his receptionist had read up on RSD and dental precautions for me before my first apointment.. kool eh?

I am realy not sure what to think of all this.. I'm just tired of it all.. I know surgery would be very bad for me, I have pain when at rest in my chest and neak and arms mostly all day... and not just with exertion so it is an unstable angina and is more unpredictable aparently.

I want any advise you can give me on this please.. your thoughts.. is this because of my RSD? I have had problems in the past but mostly due to drug allergys.

Diet?.. Big time antioxadents.. research will distract me but it gets scarryier the more I do as you all so very well know. Such is life..

I hope you are having low pain dayze my friends.

Hugs,
Sandra

[mbrfz]

I have always just assumed it was the rsd, maybe I better go have it checked, It feels just like a heart attack or the warning signs, but they say rsd mimics all of that so I have tried not to worry... Good luck to you , you are in my prayers! mbrfz

[Sandel]

hello again..

I saw the heart doc yesterday and he said that he dosnt think it is a problem origionating from heart disfunction (yay) but more likely from the pre-existing condition affecting my heart, he said that it was a small echemic episode so I am feeling somewhat better..

I am going to see another specialist in Victoria soon I guess to check into this more, I wanted to let you know it is very important for us all to check out chest pain symptoms.. mine snuck up on me see your doctor.. don't just presume it is RSD cause RSD causes damage.

Now I am off for a vacation weekend..
hugs an be well,
Sandra

[Jenmedic]

Sandel!

I just had a chemical stress-echo test! It was not fun! I don't have any ischemia, but after the drug they used to get my heart rate up, my CRPS has flared something fierce!!! They had to use quite a bit of the medication, as I am basically young and my heart is healthy ( they were checking it to clear it for a possible surgery). I was really quite shocked. I didn't let them touch it or do anything on that side at all, so I'm not sure what happened, other than I was really dehydrated before the test started...

Glad you are doing better, and the stress of that result was clarified for you!
:)

[Diamon Lil]

Hello Sandra: What good news to hear!! Now you can really enjoy your vacation without that on your mind. Regards, Lil

[Sandel]

Jen hi..
I was told by the cardiologist that they usualy find that people with CRPS experience a spike in their pain levels almost imediatly due to the medication they give you to exelerate your heart. I sure hope I get that doc for my cardiologist there he was the most understanding compasionate doc I've had yeat.. if only for a bit.

I hope things are well with you all, soft hugs,
Sandra

[markdoc]

I don't want to scare anyone, but at 49 (now 51) I had a heart attack. I was in a coma for 10 days. Almost didn't make it. The only symptom I had was severe pain in rt shoulder and chest about once a month. Please get checked for cardiac problems and don't assume it's RSD. I'm OK now with my heart, just take more pills and get checked every month. Best wishes to all.

[Sandel]

Hi again

On dec 18th I thought I was having a heartattack pain and shortness of breath were off the wall, called ambulance and was rushed to hospital.. they were gonna let me out.. till they did ecg # 2 then they found abnormalitys and kept me in.. heart pain continued over 10 days in ICU then the sent me to Victoria for angiogram.. my docs and nurses insisted they would know CRPS there.. yah right, not so lucky me. I got the head of cardiology there as a surgeon for procedure.

my right arms still very sore from angiogram.. hope it will be alright..
they refused to take precautions,, said 'well thats not gonna happen' when I told him what precautions were nessary (while I was on the table for angio) when he came in the room a few moments before and I told him (reminded.. it was all over my chart) he said whats CRPS?.. I knew I was in trouble.. I found out afterwards they did not even sedate me as they do according to all info I have read or seen on hospital video's.. it was extremely painful nightmare for me.. and they thought I was being "hysterical cryin and carring on" was heard by me as 2 nurses talked later.

I have had nightmares both nights since, it was very painful and i felt the 'snake' go through my drain pipe, they had to pull it in and out like a pipecleaner and I heard them say they might have to go through the other artery (at the hip) but then got it into the heart.. I felt it all and was trapped in a nightmare of pain and almost violation feelings.

Sory I dont mean to scare anyone but was how i felt and still dream it bad.

I just pray it dosnt stay in this arm as we know it can.. and I hope I/we can find some answers soon this is just so nasty bad I cant do much without the pain comin... (when I rest mostly but after any exertion it's bad)

Varient angina mabie?.. Off to research! But Hark... Good news at last, next post here.

Big hugs.. real soft now,
Sandra

[Sandel]

Now for some good news, christmas morning in the ICU ward I got the most wonderful christmas present, the doctor who was subbing for my GP that weekend is Comox Valleys chronic pain specialist her name is Dr. Barb Fenlaw. (I never knew we had one)

She is gonna take me on as a patient and she told me that yes RSD does effect organs and that was probibly what was happening to my heart, she will talk to my doc she said and explain it to him and she will help with WCB too.. She has been studying abroad and specialises in eastern medicine phylosophy (acupuncture etc,,) she also studdied in 2 major pain clinics in BC.

Very nice very compasionate I am afraid I let it all out on her all my symptoms and my anxietys, she did not tone me out or get that yr telling me too much look (you know the one I mean) The acceptance in her eyes and just the nodding understanding is something I have not seen in a doctor since RSD set in.. and I cried when she left.. out of happiness and joy.. finaly suport and validation and yes my salvation, as I feel I am going downhill healthwise fast friends.

I feel WCB is responsible for that downward spiral and not having medical support or even a doc with a clue about RSD other than what the WCB dr duck says (no spread etc..) is/was killing me stress wise, cause I have got it full body and now and my organs (plural) are involved and that i think CAN kill me if not controlled.

I knew most of that as they made me pound the pavement for work all summer that it was worsening but they would not listen to me and as I say I hold them mostly responsible (sory my rant) for my condition now.

But I had to pass on this great news in hopes it can help another, an just cause it makes me so gosh darn happy and I need to share and pass on some of my happiness and relief to you my friends who have been through so much with me.

Happy new year everyone may next year be a better one for us all.

Sandra

[kathy d]

Sandra,
I am so excited that you finally are on the right tract with the RSD and internal organs. I have felt it eat away and cause severe pain in each of my organs last year. It was really eerie. Doctors would look at me like I had two heads and I stuck to my guns. I had my bladder get worse and worse with each day back in Aug 2005 until I could not urinate at all and I was completely paralyzed. My son had to call an ambulance to get me to the hospital. IT was the worst time of my life. I was in the hospital for several days and the neurologist said to put another 50 mcg/hr of Fentanyl. I told him it was too much because the other W.Comp doctor and I had tried it and I started seeing things moving and I got really bad head rushes. So, I knew 75mcg/hr was to high and this doctor slapped another 50 mcg/hr of Fentanyl patch for a total of 100 mcg/hr and nearly killed me except that afternoon my son noticed [thankfully] I wasn't acting right and picked me up with his friend and they drove me to the hospital. They admitted me there for several days but I tell you it was horrible and I felt like crap. I thought I was going to die for sure but God bless my son because he helped me out so much. So, sometimes the doctor's are not so sure of what is going on. You have been dealing with this disease for so long and you need to speak up when they tell you something and you think it is wrong. It is your body and you have every right to take care of it best as you can. I will keep you and my fellow RSDers in my prayers each and every night.
Take care,
Kathy d:D

[Cutiepie]

Hi Sandra,
I'm sorry to hear you have had heart problems and had to spend Christmas in the hospital, but I agree that you were blessed with a wonderful Christmas gift. I'm so glad you finally got a compassionate and knowlegeable doc. I know how great that feels!

Side note: My daughter had a heart attack 1 1/2 years ago (she was only 25 yo). After an angiogram that showed that half of her heart was barely pumping the cardiologist and neurologist said it was her MS that caused it. She now has heart problems every time she has an MS attack.

It is terrible and scary the way these nervous system disorders affect internal organs. I really hope that your problems will be a thing of the past very soon!

Take care,
Julie

[allen]

Hi Sandra!

It is good to know your getting things taken care of. I wish I could have that luck, I know you were having not so good luck until now, and I hope it all continues for you ;)

This subject is the one that started the whole nightmare for me. If it wasnt for my dad dying at age 48 of heart problems I probably wouldnt have rsd now. But he did, and I do :(

I thought I was having heart troubles that led to an angiogram, that blocked the right leg femoral artery for 7 days, that gave me RSD. Now im having what I thought was heart troubles again, and even rode the ambulance to the ER.

I find out from there that it IS RSD interfering with my internal organs. Now if I can just get the doctors that I am seeing to believe that :rolleyes:

My life has been going downhill it seems everyday. I dont have it full body, but in the last 3 months it has spread to my shoulders, and the complete right side of my body, including my internal organs. When I read that Kathy was having bladder problems, and the symptoms, im thinking that is what is going on with me too.

It is amazing how similar all of our problems are, even though we all contracted RSD a different way. You would think that would give a doctor a clue or two over the years. At least make them believe us.

I hope everything continues to be good luck for ya/and keep posting what happens because it seems everything is soooo relevant.

[EJK]

Allen - Hang in there Bro! I understand and feel your frustration. You mention that the subject matter brought up by Sandra also started the whole nightmare for you. It seems to me that this monster (RSD) has many, many tentacles.

My nightmare resulted from a successful lumbar disc operation back in 2003. In the year following the onset of my RSD, it has spread and has attacked my internal organs as well. So many new and otherwise unexplained issues have come up, I know RSD must surely account for many conditions. I have gotten to the point that I ignore the lack of knowledge on the part of some doctors. What really saddens me is that many doctors have no desire to learn about the complicated issues associated with RSD, making it easier to quickly dismiss our distress just because they don't have answers. (What they don't know in no way lessens the battle(s) we face.)

It makes me angry when I read that others are going through the same issues with their M.D.s. At the same time it is so encouraging to see the strength, understanding, and bond we have on this forum. We keep each other going from one situation to the next; from one day to the next; through good days and painful days. So as you battle feeling that things are going downhill, please know that you are in the prayers of people like me - because tomorrow I may need to draw strength from you. Be encouraged allen!

Sandra - I hope that this message finds you still headed in the right direction with your condition.

HAPPY 2007 & little or no pain!

EJ