Sick to sicker
Posted , 5 users are following.
Hi! In March 2017 I was taken by ambulance to the hospital. I had no signs or symptoms. I was diagnosed with pneumonia. Within 24 hours I was put into a drug induced coma for 16 days. The doctors said they had to put me in the coma because I was pulling the tubes they had down my throat out. Anyway , when I was awaken from the coma my left arm was extremely swollen, shiny, in horrible pain and I couldn't lift it without picking it up with my right hand. While in the hospital they put a PIC line in (which I was some what awake for) . Since the PIC line was put in they knew there was a problem. Actually two problems one was I had developed Candida glabrata fungemia. This is in my bloodstream and my right eye. I was discharged from this hospital because I threaten to contact an attorney. So when I say discharged I mean "put out". I could not walk and could do nothing for myself. Within 24 hours I was admitted into another hospital. I was there about a month being pumped full of antibiotics. They were treating my arm with narcotics and didn't know what was wrong with it. Finally, I was discharged from this hospital but only for five days. My Mother had been taken care of me and I was getting worse. So I went back into the same hospital for another month. So I was in the hospital for about three months and seen every kind of doctor and specialist they though I should see. Still no one acknowledged my left arm as having rsd or crps nothing....I complained daily everyday about my left arm. Still nothing. Finally, I was discharged from the hospital and began my own research. I took my information to my PCP and she had never heard of the disease. At this point I'm getting be on hopeless. She did send me to a pain management doctor who finally diagnosed me with crps type1. I am still in horrible pain. I have insomnia, major depression, severe anxiety and I for the first time in my life uninsured. If it wasn't for my church helping me pay for my medicines. I probably would not be here today. So this is the first time I have shared any of this on a website or group. I just found out about it yesterday so I hope I can help somebody or somebody can help me. I don't know what I need. I know I want the pain to stop. Because it is truly driving me insane. If anyone out there has ANY advice please pass it on to me. Thank you in advance for reading this and for any feedback you can give me. God Bless
0 likes, 23 replies
Laney_Lu Jen0330
Posted
Hi Jen,
WOW.. Having a relationship with God is the best connection you will always have!
I'm sorry pneumonia turned into all you just shared
I've had pneumonia, but never had any tubes because of it. What lead up to having 911 called? I mean, did you all of a sudden become so sick you couldn't drive, or did someone find you collapsed in your house, work, or wherever you were?
Do you remember why the hospital put tubes down your throat? Since I don't know what happen the lead to you wanting an attorney I don't understand why they booted you out? That's a lawsuit right there, but you do have to be strong enough to go through that huge process.
I ask about why you were taken by ambulance to the hospital because I wonder if you fell on your arm?
Is that the arm they put the IV's in? I've never heard of Candida glabrata fungemia in blood system or eye, I thought it's primarily in our stomach? Trying to figure out what trauma to your arm then or earlier in your life lead to CRPS affecting you there.. Wonder if old injury to your arm has now become CRPS or if IV's at the hospital started it?
There is a great support group in facebook called;
CRPS, RSD N Me support group
Spelled exactly like that, just copy and paste in facebook browser. We all have CRPS, support each other with ideas, what kind of Dr. to seek, what's help someone, and stuff like that.
It was through this group I found out what kind of Dr. or specialist to look for. Some people see 2 or 3 Dr.s. Can you get insurance through whatever they call Medicaid/Welfare there? You'll have to get that 1st. Call every pain managment place you can and ask, ask, ask, if they treat RSD/CRPS. If they don't have a Dr. who even knows what CRPS is, call another place.
I live in Arizona and asked facebook support group if there was anyone in AZ who can tell me who their Dr. is. I pray, do simple physical therapy stretching every day, apply a essential oils pain blend I made, medical marijuana helps big time with pain. Doing all I can while I continue to look for a Dr. I just started seeing a chiropractor who also is an acupuncturist who does simple manipulations, no snap crackle popping me, CST (Cranial Sacrum Therapy). I've only seen her 3 times and get lasting relief every time, feeling better since seeing her. My CRSP is in my spine so it affects every part of my body. My PCP said a employee of hers had lidocaine infusions and was pain free for 2 years.
Pray, get hooked in with facebook support group, and call until you find a place that knows exactly what to do with CRPS patients.
I could not do life at all if I didn't start my day with Alistair Begg. He is an amazing Pastor, teaches right from the Bible. He's also on facebook Truth For Life with Alistair Begg.
I stay with God 24/7! I pray for all who are in excruciating pain throughout each day!
Pray you do find support, Dr.'s, and friends who will be there for you. Oh, do you have disability income? If so, you can get state paid for insurance very easily..
I pray God heals you, relieves your pain, and carries you through each moment of each day!
Struggling50 Laney_Lu
Posted
Hello.
I also found that medical marijuana helps with the pain. It got rid of my spasms too. I ate one Indica marijuana edible at bedtime and it put me to sleep and I stayed asleep and it controlled my pain during the night and the next day. And as I said above, it got rid of my spasms.
I always would buy a strain that was good for pain relief and sleep.
I had to quit taking it though after I developed Serotonin Toxicity, this May.
I am doing OK without the marijuana but when I stopped taking it, I had 2 days of excruciating pain in my right foot and ankle and leg. My ankle swelled up and turned red and it felt like I was walking on a broken leg. I was afraid I was going to have to go back on crutches but I made myself walk on it and it passed after a few days.
Thank God!
I was in an ATV accident that crushed my right foot.
It was broken in 3 places and just crushed. Soft tissue crush injury and bone crush injury. The MRI showed bone marrow oozing out of every bone in my foot. I have Fibromyalgia to begin with and I think that is why this injury developed into CRPS.
I have CRPS type 2 in my right foot and leg. Sometimes it burns hot and sometimes it burns cold. I have had it 2 years and 2 months now. I was on crutches for a year. I started walking again the middle of July last year. I started taking Benadryl at bedtime with my marijuana edible. My pain started to be less intense and I made the effort to walk, without crutches, around my kitchen, then pretty soon the house, then in public. I had a limp but I was walking. Now I walk without a limp but my stride is shorter and I can only go at a certain speed. I can't walk really fast. I have to keep a measured pace.
Fortunately I was diagnosed after one month of pain and I started aqua therapy at the local hospital. They have a warm salt water pool. Unfortunately I was injured during physical therapy and the CRPS moved from just my foot to my leg.
After a few months of pain and misery I started doing physical therapy, on my own, at our local rec center in their pool. This helped for range of motion and getting me and my leg strong. I was able to swim laps with just one leg. Although, the chemicals in the pool made my foot hurt and I stopped going but that is when I started walking again. So, the pool helped me but hurt me at the same time.
I prayed every night and during the day as the spirit moved me. I found comfort in reading about people's near death experiences. I have had a near death experience before and found many similarities between mine and other people's experiences.
I am SO grateful to God that I am mobile again and have less pain.
I see an acupuncturist. I was going twice a week but am trying to go once a week, starting today. The acupuncture is great for sleep and relaxation and stress relief. She just started treating me for Nerve pain last Friday. I've only been going to her for two months and she was treating me for the Serotonin Toxicity and some menopause symptoms.
But the acupuncture has definitely helped me with stress, sleep and relaxation and uncomfortable menopausal symptoms.
You sound like a positive person and that is reassuring. Knowing that there are people living with CRPS that are actually LIVING a life.
I am so grateful to GOD that for the last year I have been LIVING my life again.
Thank you for your great post.
God bless you and everyone with CRPS and chronic pain and illness.
Jen0330 Laney_Lu
Posted
Hi there. I'm so sorry it has taken me so long to get back. I didn't realize anyone would read what I posted. Anyway I want to let you know I have a Facebook page. My name is Jennifer White and my number be is 9019303109. Please give me a call anytime. I live in Memphis , TN.. please call. God bless you
Jen0330 Struggling50
Posted
I'm so sorry your going this. Bit I totally understand. I've been struggling for about 5 months . The doctors I see don't know anything about this disease. I have a Facebook page under Jennifer White. Which there are a lot of my number is 9019303109. I'm in Memphis, TN. Please call
Struggling50 Jen0330
Posted
Hello.
The doctors around here don't know anything about CRPS either.
The problem is there really isn't much known about CRPS.
You have to find what works for you. It is trial and error.
The only really known "cure" is Neridronate. I don't think it is available in the US yet. Many CRPS sufferers go to Italy for treatment.
I was accepted for a Neridronate trial in Denver Colorado right after I was diagnosed. But then I couldn't take part in the trial because it was only for Type 1 & I have Type 2. I'm sure once they have collected all the data from the trials, Neridronate will be available in the US but I'm sure it will be expensive.
Maybe look up online if there is a Neridronate trial near you.
I take 1800 mg of Gabapentin a day. 600 in the morning, 600 in the afternoon & 600 in the evening. I take one 50mg Pristiq XR a day & one 10 mg Hydroxyzine HCL at bedtime. Hydroxyzine is a prescription antihistamine. It helps with sleep, pain & anxiety.
Benadryl has helped my pain too.
I did physical therapy in a warm salt water pool. Look up online exercises for CRPS. Or aquatic exercises for CRPS. Keep the injured limb moving, gently, even if it hurts. Lack of movement actually will make the CRPS worse.
Try to eat a clean diet. No processed food or fast food. No bread, pasta, caffeine or sugar or alcohol. Just veggies, meat, fruit, eggs, nuts & lots of clean water. Some diary.
If TN passes medical marijuana, give it a try. It really helped my pain & eliminated the spasms & put my to sleep at night & kept me asleep. Sleep is SO important with CRPS & it is hard to get good sleep because of the pain.
You may be able to get CBD oil in TN, by mail.
I found that traditional opiod pain killers did not work for me & I didn't want them to become a problem.
Do something that you enjoy everyday. Find joy & awe in a beautiful day, a sunset, a kitten, children laughing. Awe is the 6th sense & needs to be nurtured. Watch your favorite comedies and laugh.
These are all things that I did and it helps so much.
Stay in touch.
God bless.
brenda_savvy Jen0330
Posted
Jen0330 Laney_Lu
Posted
Thank you so much. My mother called the ambulance because I was getting weak and could not walk it came on all of a sudden. No signs of anything. They said my blood pressure dropped very fast and I couldn't breath on my on. I had four ivs in each arm and one in my neck. My mom told me. They had to get her ok to put the pic line in. I don't think k there where any problems until the pic line. I don't know what they may have done to me while I was in the coma. I live in Memphis. I have applied for everything and been denied but I am appealing. Anyway I may have told you that I would rather talk than text but this is the first time I have been in a group so I don't know how to pm. I have insomnia too so I available 24/7 usually.. God bless
Laney_Lu Jen0330
Posted
I sent you a private message through patient. You have to log in and you'll see your messages. Once logged in you can click on me and send me messages also.
Jen0330 Struggling50
Posted
Thank you so much. Please stay in touch. Where are you from? I'm in Memphis. How long have you been dealing with cprs? Can you talk on the phone? I have tried some of the things you said. But you do have to find out what works for you. I don't know how to send pm message yet but you can send me your number. It's easier for me to talk. Take care God bless you!!
Struggling50 Jen0330
Posted
I actually I not good on the phone. Not even with my own sister. I never know what to say. I guess I am shy. I will figure out the private message and let you know.
I am in Colorado. My name is Tracy.
Read my replies to Colleen and Guest for some tips I may not have mentioned to you.
Gentle hugs.
Jen0330 Struggling50
Posted
Struggling50 Jen0330
Posted
I would like to communicate with you by private message or like this. I have told my story so many times on this site & on others. It is stressful to keep reliving it. That is why I suggested reading some of the other replies I have left. I hope you find relief soon. Gentle hugs.
Jen0330 Struggling50
Posted
I understand how you feel. Its hard for me to type because I'm on a phone for one and I'm new to this. Anyway hope you feel better and if you want to talk I am hear 24/7. I would lo be to talk to someone.
Struggling50 Jen0330
Posted
Did you get the 3 private messages I sent you today?
brenda_savvy Jen0330
Posted
Hi there.
Sorry to hear you went through should a horrible time.
Ok so you have crps in hand and arm ? What do you take for pain ?
Do you move it /use it ?
It's important to keep moving it starting off in small bits. Google pacing. How to pace with an illness.
Buy Epsom salt. Use in a bath daily. You could also put the salts into a basin and gently put your hand arm in there nice warm water.
Is your crps cold or hot ? I have cold crps. This means I have the burning sensation but my limbs are cold.
Can you get CBD oil where you live ?
Are you seeing a pain specialist ?
Jen0330 brenda_savvy
Posted
I move it as much as I can . I have a OT that comes once a week. I have never been on a discussion board.
I replied to your message and left personal information and it was. deleted.
Anyway, I would rather talk than text cause I'm to slow
Plus I am just learning how to work this site. I don't know how to send a pm
My battery has to charge so I Will be back. God bless