So weird

Posted , 5 users are following.

Well it's been just over a week since I saw the doctor and told him about my chest issues. It's now done it three times all right along with a flair up. On top of all that today my left arm out of no where went ice cold and turned purplish😟 and when I moved any part it was absolutely painfully, I'm so worried that it has spread, I've been telling doctors for the last year what has been going on and they aren't listening, it wasn't bad bad a year ago and now it's sometimes unbearable, hiding in my room cause of pain and I can't use my upper body, meds aren't helping either 🙁

1 like, 5 replies

5 Replies

  • Posted

    Hi Melissa

    Unfortunately, it does sound like it has spread to the other arm..that's exactly what my left arm does. Aches, turns ice cold and the hand purple. People will often notice it and comment. It was my original site after neck surgery to remove a herniated disc at C5/6..within 6 months started having similar pain in left leg. Now the arm pales in comparison to the pain in leg. Although, leg doesn't turn purple, despite being ice cold, it turns a deep red. Now having symptoms in right leg (original symptoms started 5 yrs ago), but diagnosis not til 18 months later. I'm now using a cane or Walker, with constant limp and terrible muscle spasms in both legs. Had an intrathecal baclofen pump put in a year ago April that helps somewhat, but surgeon keeps having to increase rate to keep spasms to a dull roar. Still despite all this, I constantly have to validate to medical professionals, that even when legs and arms are not discolored, they still hurt something awful. I have found that CBD is helping with pain and spasms that an option for you? I take it orally in capsule or liquid form and it had zero side my one doctor said 'it used to be a flower'.

    This is a monster of a disease, not just because of the pain and life altering effects but the constant struggle to have people ' believe' you, and I'm an RN that has worked with most of these docs for many years. Please, please hang in there and don't give up insisting on the changes you're having! One 'pain specialist' ( I use that term lightly as for someone with a fellowship in pain management, he had never heard of CRPS spreading from one site to another !!) Thank God for this place and others like it to help us not feel like we're going mad.

    I can't believe the tests, procedures etc I've had to endure just to prove that it's not something else..this last admission with leg completely flared up and spasming I had to undergo an ultrasound on it, pushing and touching and repositioning it to the point of tears because intensivist wanted to make sure redness and swelling wasn't a blood clot, even though I explained repeatedly that this is what it does with CRPS..

    Take care of yourself and let us know how you're doing


    • Posted

      Someone needs a refresher course if they had a fellowship in pain management and never heard of CRPS spreading, sheesh. LOL show up next time with brochures for the next pain conference for him to attend!

      I do have to say though, sometimes one does have to go through procedures like the ultrasound to rule out a clot, even though it is most likely a CRPS symptom, because missing a clot could be life threatening.  Better to be safe than sorry. I know, I had to do this too with my recent CRPS diagnosis, when she took the cast off my foot she grabbed my calf and I screamed.  It was off I went to ultrasound.  The leg and foot looked a lot more like CPRS than blood clot, but it had been immobile for 6 weeks so it was extremely likely it was a clot. So, sometimes you have to put up with doctor's tests. It sucks, I know..

    • Posted

      You're exactly right, and if I hadn't been up walking with my walker in the halls every few hours I would have happily accepted an ultrasound. In your case, certainly necessary (but that must have been extremely uncomfortable!) And I was glad she ordered it and it was ruled out. In the end I was kind of able to say 'see?' it's CRPS! The thing about my discoloration and swelling is, it does it randomly and sometimes just for a short while, so if they don't see it, I get that look..

      And yes, thank you about the other doc! I just couldn't believe it! All he had to do (or anyone for that matter) is type in 3 or 4 letters in Google and read the first paragraph!

      I try to take comfort in the idea that maybe they learned something they didn't know and that's the 'awareness' we all need!

      All the best and thank you.


    • Posted

      Omg Andrea...that is so right!! I am 6.5 years in now and my symptoms and appearance of my feet/legs has changed dramatically since the onset. They all want to constantly go back to the beginning symptoms and not how things change through the years. My swelling has gone down about 80%, I am in the trophic cold stage now but still have some of the burning at times as well. My hypersensitivity has got better. I use to have to guard my feet in fear of someone touching or accidentally running into them. I have SEVERE bone pain now, it traveled up my legs to my hips. It is so hard to describe...this disease has the most craziest symptoms that can change in a drop of a hat. Since my swelling has gone down a lot, the docs want to look at you like...well, you should be all SWOLLEN up. That look, like you said. It makes me furious! They didn't see me when my legs and feet blown up 5x their regular size for 3.5 years! They just see us for 10 minutes and don't know what we have gone through. I had a couple of doctors look at me on the "first" visit after 3 minutes telling me that they didn't think it was CRPS! What the??? Really, you just saw me for the very first time and you are already changing my diagnosis that "5" other doctors have confirmed plus the state of Texas!!?? This is what p*sses me off! They sit there, look down and all of a sudden they know it all! I had a doctor tell me because I was wearing legging's and was walking that it can't be CRPS! OMG REALLY! Pure stupidity and ignorance...I was floored! Then another one told me that she didn't see "muscle wasting" so it can't be CRPS! This woman actually thought I should have muscle wasting when I walk on my legs...for real?? I use my legs so how can I have muscle wasting, I haven't been in a wheel chair (thank god) all these years! Muscle wasting comes from non use you stupid so called doctor! This is what kills me...common sense. Needless to say that visit didn't go well because I called her out and she told me in a smart*ss kind of way that "she did go to medical school", I said "And"... she jumped up and said "I don't like the way you are talking to me" I graciously replied that "I didn't like the way she was talking to me either"! She left the room and I was out of there! Who wants a doctor that has no clue about the disease you have? I was sent to pain mgnt for "pain mgnt" not a diagnosis from her...I already had my diagnosis, thats why I was sent there to begin with! Geez!! A PA ask me one time, what was the name of that again??!! mean CRPS?! Totally absurd what we have to go through! They have our lives in their hands and what can we do? They can just tell us that they won't treat us and send us on our way if they feel like it. It is so wrong to be subjected to this kind of abuse from the medical community. They have us backed in a corner. Best of luck to you...take care! Soft ((hugs)) xx

  • Posted

    Hey Melissa, I completely feel your pain and hate to know that more and more people are continuing to go through this. I have had CRPS in both my feet/legs for about 6.5 years now plus other medical issues that warrant pain medication. I don't know where these so called doctors have been in regards to CRPS?! They don't know what it is or have no clue of what kind of pain we are experiencing. All they do is read a little bit of literature and think they know everything about it! If they would listen to the patients they would learn about this horrible disease. I am a very educated patient when it comes to knowing my disease, I stand my ground, they think we are faking it or are a drug seeker! This is with years of medical history provided as well! I am very ANGRY! I could tell you some of the most IGNORANT statements they have told me that would floor you. It makes me so mad to hear that we are suffering because of their ignorance and the government now stepping in to tell them what we can be prescribed and how much! When it comes to chronic pain, there is NO "one size fits all"! There are 110 million chronic pain patients being taken off their medications that they have been on for years and or reducing the dosage. It makes no sense what so ever! We are the ones suffering because of the recreational drug users killing themselves with illicit drugs like fentanyl and morphine, We are put in that class even though we have taken our meds correctly with no problems for years. We are talking about peoples lives here and trying to live a some what functional life like other people. They take for granite the ease of just hopping in the car to go grocery shopping or taking their dog for a walk... we don't have that option! They don't know how it is to feel horrendous pain 24/7 - 365 and it never stops and never will either because there is no cure. I had a doctor tell me that me taking 6 norco a day was too much and should only be given to terminal cancer patients!! Are you kidding me?! That regiment with a muscle relaxer, helped me tremendously. I wasn't walking around on cloud nine, I was able to do simple everyday tasks. If my pain level was around a 4 -5 on the pain scale, I was functioning. That is the difference between regular people and CPP (chronic pain patients). They just DON'T get it! As far as them telling me that only terminal cancer patients should be on that dosage...I have to say that at least with terminal cancer, I would know my pain would be coming to an end!! I just turned "50" years old and will probably have 25 - 30 more years of living with this HORRIFIC PAIN! Think about about. These doctors are clueless. The government and FDA etc are sitting around a table dictating our medical needs?! They have all the pain doctors scared to do their jobs and treat their patients or face the possibility of losing their licenses?!! This so called "war on drugs" is taking our rights to be treated...DO NO HARM! This is America, not a third world country. The war on drugs has been going on forever and will continue but it shouldn't be at the CPP expense! Recreational drug users will always find a way to get "high" regardless, this crack down will not change that. But yet, here we are the ones suffering a life of HELL in the mean time. It is totally absurd! The suicide rate will increase because people cannot live life in chronic pain. Can ya tell I'm a little bit p*ssed?! What...will we have to turn to street drugs now? Pretty pathetic to be told that our pain isn't that bad and just prescribe us the expensive designer drugs that you see in tv commercials...they don't work for everyone, we are all different. I have been through the mill on all those and the side effects are awful, super expensive plus they don't even touch the pain. Our insurance companies and pharmacies are now getting too involved in our care too. They won't cover certain meds and or the amount prescribed by the doctor or the pharmacy won't fill it for the same reasons! They are NOT doctors! What is going on here??!! This has to stop now. Sorry for the rant but this is peoples lives here. I feel for you Melissa and hope you can find some kind of relief soon. I had to go through 3 pain doctors since my wonderful doctor retired and it has been awful. The new doctor I have now cut my dosage in half and I am in terrible pain. I am at the end of my rope like you and don't know what else to do. We need to speak out and demand our rights to be treated without prejudice or put in a "one size fits all" pain medication regiment that board members, governors, senators and the president thinks we should be taking for our individual medical needs! We are suffering. Hang in there Melissa, sending prayers and soft hugs your way. If you need to ever talk through a flare, feel free to message me. Take care of your self...Hugs from Texas xx   *Again...sorry for the rant.*

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