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...