I wish I knew where to start
Posted , 5 users are following.
My story is unbelievable. My suffering is 24hrs a day. More than just RSD. I CANNOT TAKE THIS ANYMORE. I have no life at all. I'll be a 51yr old male in June. My family suffers as well seeing all of this happening to me. This is my 1st time ever joining a group of sufferers from RSD. Mine is very complicated as well but I have other chronic issues. I've convinced myself that talking to others won't help because of all of my diagnoses. I feel now that I have no purposes anymore. So debilitated. I'm sorry to sound so pathetic because I cannot stand one to pity me. I just wish that I had my life back. I am completely changed now, no more wit and happiness. I know that there's no answers, believe me, I've given my all. Well, back to the couch where I've been for two years only being able to lay on my right side. Now my right side is being affected. I want to cry or throw up right now just typing this. I'M COMPLETELY LOST AND HOPELESS ABOUT MY CONDITIONS. Please, no disrespect to all who are suffering. Believe me, I understand.
1 like, 24 replies
brenda_savvy ROCKY_BALBOA
Posted
I completely understand.
I have crps only 20 months but it moved from one limb to full body and now head and face.
I had thriving career and fitness guru.
I want my old life back.
Can’t accept this at all !!!
My family also affected.
3 young kids and hubbie.
Difficult today as I couldn’t. Eat. Pain too bad in mouth now.
But let’s hope that I will get better. I live on hope !!!!
Have you tried many pain relief ? I am trying to follow a beret diet and have started ketamine. Very low dose but it’s helpibg me eat.
ROCKY_BALBOA brenda_savvy
Posted
Hi brenda, full body RSD is certainly not a joking matter especially when it gets into your face, neck, jaw, head and so forth. The inner ear sucks as well. I'm not handling this very well as to where I have some other serious issues that have changed my life. Lidocaine patches all over the left side of my face. I would like to be more descriptive but right now isn't a good time. I really want to tell my story and it's a long one. Everyone, including my docs and their staff that I have seen are overwhelmed at all that I have and gone through and how I still continue to go one much less survive. It's an amazing story with heart crushing things I have to go through daily ad nightly. I will take some time out and write my story on this site if it will allow me to providing it will give me the space. I certainly hope that No one will take offense as to where I'm trying to say that I'm worse off than anyone else. Of course, that would not be my intent. I'm guess what I'm trying to say is that I'm trying to convince myself to reach out as well as to listen to other sufferers. I keep feeling like I'm the only one because I haven't reached out. I also feel that talk therapy in pain management with a mental health specialist is useless because they cannot possibly feel the suffering that I'm feeling. I cannot travel well because I cannot sit like a normal person would. It intensifies my symptoms. All of them. So either I lay on my right side or stand until I can't take the pain anymore. Oh the creams, gels, and so on for muscle pain I have used. Now I find that they increase the existing burning pain that I have so severely. I have no good days and there getting worse. I am so extremely sorry for what has happened to you. I've always been a great encourage type of person because Ivery always liked to talk and listen. Listening is extremely difficult because of suffering while trying to do so. I'm certain that you understand what I mean. Anyway, hang in there and thanks for your reply. Like I said I'm knew at this reaching out. I guess stubbornness has blocked me from opening up. A work in progress. I'm learning because I have to. Another thing, I'm in love with life. That's another reason I'm so broken because of how I'm ending up. We all know the real truth,,,, we don't want this at all. Take care and keep an eye out. I just may take the time to tell my story. I may find out that I'm not alone after all.
brenda_savvy ROCKY_BALBOA
Posted
Struggling50 ROCKY_BALBOA
Posted
Hi Jimmy.
Firstly, I am so sorry you are going through this and have so much pain.
I am a 51 year old female.
I have had CRPS Type 2 since June of 2015. I had an ATV accident that crushed my right foot. I went to physical therapy and it helped for a while until they pushed me and it moved up my leg.
I was on crutches for a year, rode the couch for a year.
I was taking 3 300 mg Gabapentin a day. I was also eating 1 10 mg "edible" cookie at bedtime. "Edible" - I live in Colorado where a certain green plant is legal.
In July of 2016 I added 2 Benadryl at bedtime. I found that it helped reduce the pain enough that I could walk around my kitchen while making supper. Then I started walking around the house, then outside a bit. It hurt and I limped but I was off the crutches. I eventually was walking everywhere without the crutches. The limp got better and the pain was less.
I stopped the "edible" cookie in May of 2016 and cut back the Gabapentin to 2 300 mg 3 times a day after I developed Serotonin Syndrome. I also have been taking Pristiq since 2009 for Fibromyalgia. I still take 2 Benadryl at night.
I try to eat a clean diet. I find that sugar, potatoes, bread, pasta, caffeine, spicy foods and nightshade foods (potatoes, tomatoes, peppers etc) processed foods, soy, aggravate the CRPS and the Fibromyalgia.
I have found that if I don't stay active the CRPS and Fibromyalgia pain is worse and the CRPS leg and foot start to atrophy quickly.
I try to pace myself though as I just can't do what I used to be able to do.
Weather affects me & hormones too.
Now I just take the Pristiq, Gabapentin and Benadryl.
I was doing pretty well for a while but I got sick with the nasty flu and have been sick for 2 months and my pain has flared up. Fibro and CRPS pain. Burning and deep bone and joint and muscle pain.
It is a struggle. I understand where you are at.
Cry if you need to cry. You have to release the stress. Don't give up.
Hopefully the FDA will allow Neridronate as a cure for CRPS in the USA.
Look into Low Dose Naltrexone.
I will private message you later about other options.
Hang in there.
Tracy
ROCKY_BALBOA Struggling50
Posted
Hey there, thank you for your reply and kind words. How extremely sorry I am for what you are going through. I don't know if you can read replies to others but if you can check out what I replied to Brenda. I would have said the exact thing to you. Right arm is heavy now so I must take a break. Today hasn't been a good day at all. I'm sure you know what I'm talking about. Take good care and again thank you. If you cannot read my reply to her just let me know. I believe if I can or allowed I may be able to share my story with hopes that no one will find offense that I'm trying to make it sound like I'm worse off than others. Certainly that would not be my intention. I guess that I'm trying to learn how to reach out. Thanks again and keep fighting this fight.
ROCKY_BALBOA
Posted
I've changed my name to Survivor67.
Struggling50 ROCKY_BALBOA
Posted
You're welcome.
Ok. I can read your replies to Brenda.
Get some rest.
It does help to talk and unleash your stress.
Tracy
brenda_savvy Struggling50
Posted
Struggling50 brenda_savvy
Posted
Hi.
From what I have read, Neridronate treatments in Europe have "cured" people of CRPS. It gets rid of their symptoms and so far the symptoms haven't returned. It works for most people.
I was approved for a trial in the USA but then found out I have Type 2 and the trial was for Type 1.
Check online to see if there are any Neridronate trials happening in your area.
Have you looked into Low Dose Naltrexone? I have heard that it has worked well for people with CRPS and other chronic pain diseases.
Tracy
rachel30085 ROCKY_BALBOA
Posted
Survivor67
I am so sorry you are feeling so hopeless at times. You definitely voiced how I feel a lot of the time. Useless, and it sucks seeing the faces of the people you are used to supporting full of angst for you. I have been a CRPS fighter for three and half years. I have had the usual therapy's without any success. I now soley rely on a certain "green plant" that helps a lot with pain, and overall relaxation. I also recently changed my diet to a low carb, low sugar and was very surprised at how well it has been working.
I know it's tough, beyond tough... But take great pride in good days and look for things to hold onto during the rough ones. You can do it!
ROCKY_BALBOA
Posted
I certainly wish I could use the green plant. I'm a veteran and also on med that would be stripped away from me if I tested positive. It happened 2 yrs ago. Six months ago the VA stripped my medson again because I tried alcohol and they saw it in my blood. The only reason I have some med back is because of a major surgery I had on 2-26-18. My future is uncertain with these meds because my neurosurgeon is prescribing for me. I know that he'll turn me loose over to the pain clinic where I have an appt on 5-17-18. I have no idea what to expect because I went to that same clinic in Dec 2017 and the doctor was overwhelmed with all of my diagnoses and felt helpless in providing me anything. So now after major surgery and my surgeon's notes I hope at least they'll understand and try to help though I feel I'll have the same result. Typing with one eye because my left eye is so blurry and chronic pain all around it. There's much more but I'd have to take the time to type and put it out there. All of you are caring people but still I wish a true knowledgeable doctor could read my (our) messages and reach out to help especially like myself feeling like I'm already dead to this world. I ageed on this being public so I have no shame, no fear of the urgency of my messages. Life matters, I matter, we all matter. If you're out there doc and you feel the need to contact me for fear of my life then don't hesitate if you have real answers. Here's a thought,,, Harming oneself by ending their life because they are already being extremely harmed every single day without relief has been done one several occasions. That's why it's known that Trigeminal Neuralgia is called the Suicide Disease. I had this since 2008. Now add chronic spreading Complex Regional Pain Syndrome with chronic Occipital Neuralgia and 24hr chronic muscle spasms. Now I have a device surgically implanted that is bolted to the base of my skull and bolted to my C-3 spinal vertebra because of Craniovertebral Instability. I cannot move my head at all, EVER AGAIN. 50yr old male with lidocaine patches all over my left side face and chin.... Okay, I've opened up now. I really don't expect sorrow, I just want help meaning some sort of relief. God will bring me home in His time, I understand that. I beg Him to end my suffering. Even our Lord Jesus cried out to Him on the cross. Even Jesus begged God the Father while crying blood from His eyes to take this cup of burden from Him. I'll leave it at that, I believe I've said enough.
Struggling50 ROCKY_BALBOA
Posted
I am praying for you. I am so sad for you. I really hope and pray that you get some relief soon.
Please try to get the Low Dose Naltrexone.
Could your wife check the Internet for you to see if there is a Neridronate trial near you?
Neridronate has had great success in Europe in the treatment of CRPS.
Praying for you.
Tracy
ROCKY_BALBOA Struggling50
Posted
Tracy, I will certainly check on that myself. Believe me, I'm a real searcher for answers. Thank you for your prayers and I will return those prayers back your way.
Jimmy
Struggling50 ROCKY_BALBOA
Posted
Have you ever taken the antibiotic, Ciprofloxin (Cipro)?
It can cause a lot of the symptoms you are having.
People call it being (floxed).
Tracy
ROCKY_BALBOA Struggling50
Posted
I never have taken that and thanks for the heads up. I also called about trials of Neridronate in my area and I am on the list for trials if I am qualified for it. It still is a work in progress for the facility that I called here locally. Trying to keep hope alive.
Thank you
Struggling50 ROCKY_BALBOA
Posted
I will pray you are accepted for the Neridronate trial!
Tracy
brenda_savvy ROCKY_BALBOA
Posted
Morning jimmy. I read your story and it sounds just horrific. The operation in neck and head. So painful. And then crps. I hope you get onntrial as at least is crps is easier maybe other issues might not be as bad then.
I think you are right to be open and honest and hope sharing has helped. I am in Ireland 🇮🇪 so a big Irish hello and blessing to you today.
ROCKY_BALBOA brenda_savvy
Posted
Good morning Brenda to you as well.
Yes, what I'm going through is horrible. I told my wife out of dispair that I feel that I'm wasting my time posting because I related it to Facebook and thing like that for everyone to know a person's business. Of course I was very frustrated at the time last night and I was wrong about this sight. The reality is, I just want a physician to read our post on this sight and be able to help. What I do find is caring people who are suffering as well and I got a few good suggestions. So I realize this is a great site. I just want help so bad. I've been going through so much, even prior to the RSD medically. I had a previous diagnosis of ALS and suffered tremendously for several years then for some reason I cannot explain I regained my mobility and speech. Then I fell causing all of these excruciating new problems. I have a huge story of relentless suffering for many years. Trigeminal Neuralgia since 2008, RSD now, Occipital Neuralgia, and constant muscle spasticity or spasms that are around the clock. I sleep on my worn out couch only on my right side now for 2 years and counting. I most definitely cannot lay on my left side or on my back. If I do find myself on my back after waking up I lose feeling in my limbs and increased parathesia. Staying on my right side has caused many problems as well. This is overwhelming for everyone. I'm just desperately looking for help. Thanks for your kind words,,,,
Jimmy
Struggling50 ROCKY_BALBOA
Posted
Hi Jimmy.
You said you were a veteran. Did you serve overseas?
Gulf War?
I have heard many Gulf War veterans have Gulf War Syndrome & RSD.
Tracy
ROCKY_BALBOA Struggling50
Posted
I didn't serve the Gulf war though I am 100% service connected disabled through the VA. Still a mystery to the docs because of my service working on battle aircraft and many other possible conditions that relate to my disability as many other veterans are affected as well. RSD? Possibly the fall I had although I had severe symptoms and a diagnosis of ALS from 2005. My body has gone through hell. Good looking out though. Stay on top of things.
brenda_savvy ROCKY_BALBOA
Posted