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I feel like giving up. I don't know how much more I can take!!!

Jun 27, 2015 3:06 PM

Hi all, I really need to vent and this is such a safe place to do it in. So this will be long but I am frustrated & don't know what to do anymore..
I was just released from the hospital since being taken by ambulance on Tuesday for what I thought was a major CRPS flare up. I live in NY on the border of NJ. Anyway the past few weeks the weather has been so horrible it's either raining or so hot you can't breathe which causes my flare ups & is constantly making me feel like I am on a pain roller coaster going up & down. It physically wears me down, I become bed bound for days with the last amount of energy I have left sucked out of me, I am sure anyone with chronic pain can relate to this & anyone living in this area with pain knows how torchering the past few weeks have been.
So lately over the past few months I have been getting achy in every joint in my body, along with pins & needles feeling mostly the pins & needles on my right side, more so when the weather is bad however my right thigh always feels like I ran a marathon all tender & sore, even on a "good day" or shall I say a chronic pain person's good day! So on a "good day" besides my thigh, my right foot will fall asleep for no reason within 5 minutes of sitting or laying in the same position & it's the pins & needles that you feel when a arm or leg falls asleep & you shake it cause you can't feel it & the pins & needles that come afterwards that are very intense & uncomfortable. I know if I get up I will fall so I have to wait for that feeling to be gone in order to get up. Anyway I guess after the storm on Tuesday my body was just done & I just couldn't recover. Tuesday I was in hand tremors for 8hrs with no relief & then I got really dizzy laid down & that was it my leg curled up & no meds, absolutely nothing was helping. I tried getting up to go to the bathroom as I was dripping in sweat, & couldn't walk. The pain was worse then ever. Pins & needles in all over my entire body even my head & face (something I have never experienced before & was scaring me as I knew something wasn't right)..
When I was taken into the emergency room the ER Dr or as my mom called him "a janitor in white coat" he had no idea what CRPS was.. He read my medical necklace which clearly states "CRPS/RSD right arm NO procedures or touching right side" this IDIOT, not only was shaking my bed but he was leaning on it & of course on the right side. What's even worse was he actually had the nerve to try to touch my fingers & tried removing my splint! ( I was still in tremors & the splint helps control them. I said to him "are you dumb?" Don't you dare touch my hand or attempt to remove my splint or I will sue you!!! Did you not read my necklace??") my neurologist doesn't even take it off... Then he leaves me alone tremoring for over an hour. My mom went nuts demanding that he give me pain meds. When he came back into the room he then said " it's hard to treat RDS & I am not an expert in this area." REALLY!!!! ??? Again I went nuts on him. I at this point had it with my pain & him. I said "its RSD ass, but I have CRPS! why don't you go google it?" (I think he did after that because he ended up getting very offensive & stated he knew what it was & he explained it as if he did just go google it. Then stated he was not trained in it) Right after he left he had a nurse come in to give me pain meds then, toradol then Valium through my IV. Well the torodol burned so much it felt like my thigh was ripping apart.. I started screaming like you wouldn't believe. They then gave me more pain meds & the Valium kicked in & it was like a miracle drug it stopped my tremors immediately.. My mom & I couldn't believe it.. I was given Baclofen for tremors (never worked) then I was admitted. When I was sent upstairs some of the nurses knew what I have & others no clue.. ( I think every dr & nurse needs to be educated on all illnesses, especially ER dr's as you never know who is coming through those doors) the nurses gave me more Dilauded IV just to move me & straighten out my legs as they were in a semi fetal position for about 12hrs at this point.. The next day was just meds & stabilizing me. They sent in a neurologist from my group I see ( not my reg neurologist) she was so mean to me she actually said to me " why are you here?" Why didn't you just wait until today & call your regular neurologist & go see him, it was stupid to come here as they can't do certain test he can & all they will do here is give you pain meds " (again another idiot! In my head I was like really Moron?) I said to her " how could I have waited as I was in tremendous amount of pain with tremors that weren't subsiding & HELLO I CANT WALK!!!!. She had me in tears & said she was emailing my dr ( never did) after that she put into a flare up & again began to tremor.. I told the nurses I didn't want to see her again.. The nurses were amazing, kind, very protective of me & would sit with me for awhile each time they came into my room. (Also having a private room helped) I felt so low & humiliated as now at this point I felt the last of my independence has been taken from me.. I felt degraded as the 1st 2 days I had to use a bed pain as I was bed ridden. Not only do they hurt but the 1st day I was almost cathedorized since I was having trouble peeing. 1hr on a bed pan... Sorry as I am rambling & not getting to the point quick enough, just frustrated with these dr's & everything else.
Anyway on Thursday they had me with physical therapy they got me up but couldn't use a walker due to my right hand even though it had an arm rest for that hand, it was to much pressure so I had to use a quad cane. I was so proud of how I pushed myself, however it was exhausting just to go from the bed to the end of the room & back to a chair. The therapist said all of my fatigue & aches throughout my body was symptoms of fibromyalgia (joy) & that they thought it was also possible that my CRPS was spreading to my right leg (even better) Later that day they ordered an MRI to make sure it wasn't anything else. Well, the MRI was so painful even after taking IV pain meds & valium before hand, it sent me into another severe flare up or attack from the vibrations & sounds of the machine. On my way back up to the room (being pushed onto the bed & being moved around hurt almost as bad ) I was screaming & crying in agonizing pain it was so bad that when I got onto my floor everyone came running & then when they put me in my room, I must of had about 10 nurses in there & my poor mom hysterically crying. They gave me more meds & oxygen as my vitals weren't great. I was told that if I couldn't calm down or the meds couldn't calm me down, I was going to end up in ICU... It was a mess. (Note to self no MRI ever again)
So when I was finally released last night, (thank god) I had to go home with a quad cane, & changed my Baclofen for Valium (only good thing) the final diagnosis is fibromyalgia & spreading of CRPS! The dr told me I must go into intense physical therapy as they can try & stop or put the leg into remission & continue occupational but my hand will never get better as it is type II stage 3-4 with irreparable nerve damage. But intense physical therapy can help my leg.
Got picked up by both of my parents ( my dad never came to the hospital to see me & my mom said he couldn't handle seeing me like that) when he picked me up he was so cold & mean to me.. He drove not as cautious as my mom would for me since every car ride hurts my hand & now the legs.. I got home & I was in tears from the pain of the car ride, my dad kept saying almost the entire way home "don't use the cane, just suck it up & walk" that made me cry, I mean really does he think this is what I want??? I don't want to be like this & I sure as hell don't need to be attack by my dad! You would think that he wouldn't act that way since while in the hospital all he did was read about CRPS (finally) yet he has been so insensitive... My mom helped me get settled & wash up & all he did was continually call my mom to hurry up he wanted to go across the street to neighbors... ( I have an apartment on their property so my mom had to help.) then today I called my mom to say " you set up my coffee but I can't carry it or my cereal. I hear him in the background saying "it's called walking! Put one foot in front of the other & carry your coffee!" (Really ass! I have a cane & can't carry anything in my bad hand not even toilet paper!!!!) I flipped out when my mom came over as I don't need this extra added on stress. This ordeal has been a major blow to me both physically & mentally & I don't need my dad making me feel worse. Whether he is upset to see me this way doesn't give him the right to hurt me with his words..This is not my fault, and I am upset as I am the one living with this!!! yet he makes me feel that it is. I am 36 does anyone actually think I want to be living with my parents, unable to drive, work , make plans etc. & most of all being unable to be independent having to throw my pride out the window take the help I need, as well as spending my days at dr's & constantly being in pain... All of this along with all the new stuff, & more pain really makes me want to give up.. I am not "living " I don't know how much longer I can suffer this way? I hate having to rely on others, feeling like I am a burden, I just hate it all.
I can never live alone ever again my dr's told me & my mom this as my parents are only here 6 months out of the year otherwise they are in Florida & I cannot live alone in the winter as I have in the past they said it extremely dangerous especially now with all the new stuff. I give up. I am so tired I really can't live this way much longer...
Sorry this was so long I am just sad, tired & completely frustrated as well as being extremely over whelmed...

Jun 27, 2015 5:40 PM

Oh my god hun, that's so awful what happened to you! I'm so glad the nurses were so kind - they really are angels most of the time. The way those two doctors treated you is unacceptable.

If you want to and are able, I would suggest writing/typing complaint letters to both of their employers. No doctor should ever make their patients feel humiliated and they should never have their ignorance on display so arrogantly.

Your father...he sounds just terrible. Has he ever gone to the Neurologist with you? He clearly needs someone in authority to explain your condition and how severe it is to him. Great he read up on it, but reading ain't nothing compared to seeing and listening. He should have been at the hospital with you and your mom to see how severe it is. Frankly, he's a coward. Maybe it's helplessness that makes him so mean about it, but I doubt it. There is almost nothing worse then a friend or family member who doesn't understand or who doesn't want to understand.

My pain mngt doctor just prescribed me a new medical food product called Rheumate. It was originally created for elderly patients with peripheral neuropathy, and, incredibly, more then 75% of them had significant pain reduction. The type of pain it it helps is the numbness and burning that comes with diabetic peripheral neuropathy, chemo related neuropathy, & nerve damage. And it is NOT a drug. It is a complex of vitamins and essential oils (I'm going to create a new topic for it). Maybe it is something that would help you too.

((HUGS))

Jun 27, 2015 5:41 PM

024,
I'm so sorry you're having to deal with all of this.
If you don't mind me asking, have you ever disassociated from your limbs with RSD/CRPS?
I can't believe your doc would ignore medical info, that is just infuriating, and likely contributed further to a flare up. You are very strong to push through pain with the physical therapy, I've had to do physical therapy and I was thankful because my therapist was honest and didn't make it feel like a small detail.
She told me it would hurt terribly.
My CRPS began in my wrist, it spread, but physical therapy combined with a ton of alternative meds helped send my leg into partial remission.
I remember being in a wheelchair and having a relative think I was just in it for fun, but she didn't really understand CRPS.
Do you think your dad will ever understand?
I get that it doesn't feel like living, are there treatments you haven't tried yet.
Like LDN, kava root, magnolia bark, or horny goat weed?
Horny goat weed helps with circulation and might help decrease the tingling.
It might also simply do nothing.
Don't give up yet, if you can.
I hope something can help, even just a tiny bit.

Jun 27, 2015 5:45 PM

Yes, please 024, don't give up yet. We're with you all the way. We will get you through this.

Jun 27, 2015 5:51 PM

I had father issues too. So sore after travelling and I just got blasted at continuously about my issues. Literally pushed me to the point where I did harm myself with intent.

911 was called and I was out for 3 days. I feel you...I hoped you don't reach that stage. We are about the same age too. So yeah....they care for you, just don't know how to show it. It gets better over time. Hang in there.

Jun 27, 2015 9:17 PM

Thank you everyone for your kind words & suggestions. I know my dad loves me & from what I understand from my aunt (his sister) is that while in the hospital he was besides himself that I was suffering & he felt that helpless & after reading he realized how serious it is & he just can't fix it. My uncle told me that apparently when I was brought out on a stretcher screaming in pain he was on the phone with my dad, & I couldn't see my dad but apparently he was as my uncle said "hysterical to the point of sounding like a 2yr old baby" I know this is his coping mechanism however I don't think he realizes how much it hurts me... Or how much it makes me love him but hate him at the same time.
I am greatful for my mom & my amazing biofeedback therapist. I believe without my therapist I would have been dead already. She has helped me every step of the way even calling & having a session over the phone with me while I was in the hospital.
@amIeLeblanc: I have never heard of this food you are mentioning. I would really like to know more & research it. I will do anything natural. Also I know my father told my mom he wants to go to my neurologist appointment as a family, but hasn't said it to me & frankly I am so upset I don't know if I want him there however it might be good. He gets now the severity of the situation & keeps saying to people " what am I going to do for my daughter?" What happens when I go to Florida?" I don't know anymore. We have had a love hate relationship my entire life... He just can't handle things & he doesn't realize how aweful it is for me to be treated the way he is treating me because of his frustration! Hah if he could only imagine mine. And I also made complaints in the hospital when I was still in there about the 2 dr's & the neurologist is a part of my neurologists office so I will be making another complaint when I go there... I didn't even know the er dr's name.. It was in my chart & the nurses wrote my complaints down.

FerretBandit: I have never heard of disassociated with CRPS? So to answer your question I have not..My occupational therapist is just like your physical therapist she tells me straight forward. She has told me that my hand will never get better or stronger as this is type II from irreparable nerve damage I have to worst stage there is. My hand will never get strong & they don't even bother trying to strengthen it. They just maintain it so I don't have muscle atrophy. I have grieved it & learning to come to terms with it however it doesn't make it easier, this will be the 1st time I have physical therapy & since it's not from nerve damage but rather from spreading & fibromyalgia they believe with intense therapy I can possibly have remission with the leg. They still want me to do a few more tests on it as the neurologist who released me yesterday noticed that my thigh muscle is protruding whatever that means. She was telling my dr I should have an MRI of it (not happening) or a emg (also not happening) I will allow a cat scan but nothing that will set me back further then where I am. Also a lot of the treatments you are talking about I have brought up to my dr & he said that a lot of that stuff is not done in the facilities I go to. He is trying to bring it there but so far no. He wanted me to go to another hospital for a ketamine infusion where I will be in a medically induced coma & I have heard so many negative things about it I won't do it. They also don't offer magnisum or lidocaine infusion yet. They really want me to go on methadone however I am terrified of that as there is a stigma with it. However the dr's keep telling me that it's the least addicting opioid & it stays in your system up 72hrs before you have to take another pill unless you are having a flare up they said they use it for a lot of people with my condition however I am still unsure... I see my neurologist in a week so I will find out more then. Once medical marijuana is legal here which should be no later then January 2016 I can opt for that in pill form or vapor pen form which I would take over opioids that your body becomes addicted to.
Octobot: What do you have? What caused you to get to that point? I hope you don't mind me asking.. Was it the family dynamic or your pain or a combo? I struggle with my family & have lost a lot of friends because of this. It just makes me realize at the end of the day who are really my friends to begin with as well as my family. My brother is a great guy but a real shitty brother as well as his wife someone I considered my friend as they have been together for over 20 yrs yet this winter when I was all alone he never once came to see me or offer to pick me up to spend the weekend with his kids the only 2 that keep me alive as my niece & I have such a strong unique relationship (she's 10) I would never want to do something to hurt her & me ending my life would destroy her.(maybe no one else but definitely her) to add insult to injury my brother lives only 30mins from me & was 10 mins from my house snowboarding with the kids & couldn't even stop by to say hi or bring in a pizza & hang out with me or let me see the kids. Yet when I was able to drive I was always there either after work or weekends or when he needed me to watch the kids I would drop whatever I was doing to help him yet I get nothing back in return... I guess it is what it is, just disappointed in them & when my niece asked me why she hadn't seen me since Christmas I told her to ask her dad or mom since she knows I can't drive & she would FaceTime me all winter to check on me & also was upset that no one would take,her to me. It sucks all of this sucks.

Jun 27, 2015 10:11 PM

Don't give up were here for u to vent any time 364/24

Jun 27, 2015 10:43 PM

024, I am so terribly sorry that you had to go through all of that pain and humiliation. I have BOTH of the issues that you are dealing with along with about 5 or 6 others. I know what a nightmare it can be. It doesn't take much to cause the CRPS to start to flare up and then the Fibro follows suit. Alot of doctors today (Especially if you go to the ER, aren't well versed in the treatment or symptoms of these problems and think that all we are there for is drug seeking. I am glad that at least the nurses were kind and protective of you. I am sorry that your Father was such a nightmare. I can't tell whether he just couldn't deal with seeing you like that or if he is just a jerk (Sorry to say that, I know he's still your Father). I am 50 and I live upstairs from my parents. I understand what you mean about wanting your independence, etc... I hate the fact that i can't live on my own. At this point in my life I feel like I am going to be alone and die old and lonely because I would never burden someone with my problems. I really don't think that anyone would stay that long anyway. They would get tired of seeing me in pain, seeing me bedridden and tired of hearing me moaning or not being able to give them sex when they want it, etc... So, I have been alone for over 20 years and don't think I'll be involved with anyone ever again. (I know that life can get pretty lonely and that with the pain, exhaustion, sadness and everything else that goes along with this horrible pain, there isn't much enjoyment). Most days, I get up, take a shower so I look (and smell ) presentable and then my energy is pretty much zapped and I lay in my recliner and look at tv or try to read a book or talk to a friend on the phone for a little while. I have to say that being on this app has definitely been a Godsend and it makes ME feel alot better when I can reach out and help others to try to feel better. You try to keep your chin up. You did NOT ask to be this way and who knows why we have been dealt the hand we have but there is definitely a reason. Know that no matter what, there is always someone here to talk to, vent to, cry, complain, etc... this is a no judgement zone and we are all here to help one another get through. Know you are never alone. Log onto the app whenever you can and reach out, there will always be someone like me reaching out to take your hand and help you along.The very best thing is that we all understand. Although we may not all have the same diseases, we ALL live in horrible chronic pain. I will keep you in my prayers. You take one day at a time and dont worry about what tomorrow will bring. Don't worry about your Father or anyone else because until they have walked a mile in your shoes, they have no clue what you are going through.... Best of luck

Jun 28, 2015 12:00 AM

@alwayzinpain::: I feel like every single word you just about how our life is & about being alone brought tears to my eyes because that's exactly how I feel word for word... I tried dating someone last yr & he did a lot of research on CRPS however, he went over board & would constantly ask me what my level was, what I should research etc.. It felt like I was at the dr's even when I wasn't.. All he wanted was to have kids & as much as that's something I always wanted I have excepted that it will at this not happen. I have come to terms with it but I don't think I will fully ever get over it. I thank god for my niece & nephew as well as my 2 true friends children who call me aunt.. I find solace in that. Especially my sweet amazing smart niece who has actually told me that she "knows I am hurting & it's ok to cry in front of her. I don't need to be brave & fake a smile just for her" she is 10!! The truth is the only time I truly smile is with her. I love my nephew but he is an 8 yr old boy so it's different plus my niece is my goddaughter...
Anyway back to the guy, after my last surgery every time he would come here as he lived over an hr away, all he kept doing was aggravating me like I just had my hand ripped open for the 4th time in 2 years with over 1000 stitches inside & out & had the nerve to complain about his hand hurting from using a mouse at work!!! I mean are you kidding me!!! Then I was in & out of the hospital for dehydration & pain as I was refusing taking pain meds. I started to get very depressed & instead of helping he would say things like " so when will we have sex again?" When can we get you pregnant?" Trying to constantly diagnose me & constantly say watch your hand!! I mean really I think by now I am well aware of my hand I don't need someone telling me what to do with my illness! I broke up with him because of all of that & honestly I had no desire to be intimate with anyone the pain consumes me & sex wouldn't be pleasurable. When we broke up he actually had the nerve to say " I should of switched your birth control for sugar pills" not only is that crazy but I have so many meds that I would of had to have an abortion & I am on birth control for ovarian cysts that I have had since I was 15 & had surgery for it about 15 yrs ago. After all this I swore off wanting to date as well not having the energy or the time to put into a relationship, for once I need to take care of me & that's exhausting in its self.. It's sad & always lonely not having anyone but when we suffer like this it's just impossible. I was engaged before all of this happened I ended up calling off my wedding to my best friend 6weeks before the wedding due to I hated his family & I don't hate anyone!!! My dad was actually the one that said to me "it's ok if you want to back out, I won't be upset ( he had paid for everything) I just want you to be happy & you're not" I looked at him with tears in my eyes & said " I want to back out" it wasn't because of my fiancé which made it that much harder. To this day he checks on me & I could never hate him. ( he is now married with twin boys) so that's when I did the only thing I could do to not breakdown & that was diving into work & having a goal of moving back to Florida & I was a licensed esthetician (skincare/makeup artist) I had my license in NJ & Florida, so my job could of transfered me.( I lived there for a few years helping my cousin open her salon) I over did it with work always working extra hrs never taking breaks because I loved what I did.. So after that ended my life consisted of work,work, more work, side jobs for weddings & spending time with my family & friends & was an yoga fanatic.. I obviously did more harm then good as that's what caused me to tear my tendon & 4 surgeries later I am where I am today.. Every surgery was different always the same hand & such bad nerve damage that my nerve near my index finger along with my artery had to be removed & my index finger is completely paralyzed with no feeling...
So when it comes to being with anyone I am right there with you..
I am so happy I found this site. I originally got the app to keep track of my pain & then found the community & started to read & I never thought I would ever write, but to read posts & to see that people walk the same walk I have & are in my shoes, I was like "wow everyone here gets me" I am thankful for finding this as an outlet. I love my therapist & family, but that don't understand what we go through. They are always helpful & I am greatful however they can't begin to imagine the pain I go through & everyone here is so nice & you just get me..
Thank you again for your last post as it really hit home for me but in a good way. 😊

Jun 28, 2015 12:28 AM

024, I am glad that I could be of some assistance. That is why I am here. It makes me feel good to know that I can touch someone else's life and maybe give them reassurance that they are not alone and that there is genuine understanding here. I am here pretty much all the time (at least once a day when I can). So know, if you need me, I'm here for you.

Jun 28, 2015 12:47 AM

Thank you so much alwayzinpain you don't know how much I truly appreciate that & all your help it means a lot.

Jun 28, 2015 12:53 AM

No worries, I am here any time you need me... Just give a holler and I'll answer!! :c)

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