I need help!

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Hello everybody. I'm new here...basically just trying to see if anybody with crps can tell me if my symptoms relate to crps. I have watched some YouTube videos trying to see if I can find something similar to what I'm going through but everything on there seems to be EXTREME cases...or I'm incorrect in thinking that I have crps.

I broke my neck in 2005 when I was pregnant with my son. I was anemic from pregnancy..didn't even know I was pregnant..and I passed out, fell off a porch, and hit my head on a car. I was paralyzed from the neck down. The way it was explained to me is that my neck popped up and out to the side...my vertebrae catching on each other and locking. This is the only thing that saved my life. If it had moved 2 more millimeters I would have died or been paralyzed for life. They did a cervical fusion..put a titanium plate in my neck with a piece of bone from my hip..and thankfully I was not paralyzed but I had to learn how to walk again..and I had to do 7 months of occupational therapy to be able to use my hands properly again.

During my healing process I would wake up in the middle of the night crying and screaming because my hands and wrists were burning with pain. This eventually subsided but I still have nerve pain in my hands, wrists and fingers. I have had hip and back pain ever since as well. Every time I would complain about the pain they told me that I had a healing process to go through. My surgeon said that whatever pain I had after a year is what I would be stuck with. After a year, I had already had my son, I still complained of back and hip pain and was told that I had another healing process after having my son. A year later I was referred to a orthopedic doctor who told me that I had bursitis in my left hip. He gave me a cortisone injection and told me that I was doing it to myself in the way that I was walking..it happens a lot especially with women when they jut their hip out to carry their children..and carrying heavy purses. The injection seemed to work for maybe 2 months..then I returned to my family doctor and asked for another cortisone shot. He did this ridiculous examination moving my legs all around..putting me in obvious pain..then not understanding why I was shaking from pain..then he told me that none of my symptoms added up to anything. He did give me another cortisone shot but that one didn't work.

I switched doctors to one that my friend went to because she really liked him and he diagnosed me with fibromyalgia. None of the fibro medication seemed to help me..and he eventually told me both medications were maxed out on strength and that he could not up them anymore. After researching fibro more I do not feel like that's what I have..as I don't have most of the trigger points and I do not have the fatigue.

After that I quit going to the doctor because I could not find anybody that would help me or take me seriously and I could not get any medication to even help me get through the pain.

During this time I had numerous issues with my hands where they would swell up so badly that I could not bend my wrist back..sometimes I could not close my hand into a fist..and it would burn and ache and ITCH. Touching the little hairs on my wrist hurt..wind hurts it..touching it too much bothers me to where it itches so badly that I want to rip my skin off and scratch my nerves underneath. I was told numerous times I had tendinitis. Then it got so bad that I thought I had carpal tunnel so they sent me for a nerve conduction test..which resulted in my being diagnosed with crps in my hands.

I have recently started going back to a doctor because my back and hip pain has gotten so much worse. I have always had times where it would be so bad I could hardly stand up properly..or walk properly..or I'd wake up in so much pain I felt like I could hardly move..but this is so much worse. My right hip has started hurting..I'm having foot pain..occasional knee pain..now I am getting horrible burning leg cramps in my sleep..and sometimes electric shocks in my thighs and calf areas. My left leg is still worse than my right. I have had times where I turn my foot and I feel like somebody has hit me with a hammer and I cannot put weight on my foot for a day or two and then it goes away. My doctor sent me to another orthopedic surgeon who told me I had hip bursitis STILL. My knee X-ray..back and hip X-ray were all normal except for inflammation. This doctor gave me cortisone injections in my gluteus medius and hip..then when my right one started hurting the injections were just in both sides of the gluteus medius. She did 3 rounds on top of antiinflammatories, convinced that it would help, coupled with physical therapy..and nothing helped. So she then gave me a MRI of my lumbar spine..and it showed nothing but a slightly bulging disc on the left side that she says is not pushing on the nerves so it's not a problem. After the negative MRI her conclusion was that I need to change my diet away from starchy carbs..go on a low carb diet..and quit smoking. She said that my diet and smoking is preventing me from healing from the inflammation. Funny thing is, she never asked me about my diet previously..she just assumed. She is willing to do an epidural on me but after leaving her office I am wondering if it is crps I have in my back and hip.

I do not seem to have any discoloration of the skin. My wrists sometimes look a little weird but nothing huge. Most times my feet look purple. I do not have significant swelling usually. I cannot distinguish any other painful areas to TOUCH but I also do not think that I have proper feeling in most areas of my body since I broke my neck but I honestly don't know because I don't know what normal feels like anymore. My feet and hands do usually feel cold and I have noticed recently that both my left and right sides going somewhat into my back are cold to the touch even when I'm outside in the heat. I do not seem to have any abnormal hair or nail growth. Unsure about sweating. The pain and inflammation is my biggest issue. I have times I will get stuck on the toilet because I cannot stand up..I have gotten stuck leaning to the side to put dishes in the dishwasher..crying and screaming because I cannot move. It has gotten so bad that I frequently stand on one leg when doing household chores because my leg hurts to bear weight. My back and hip are constantly burning..there isn't one moment of the day that I'm not aware that I'm in pain.

I'm unsure if this is crps because the horrible parts of it are not constant. I want to ask my family doctor for a referral to a neurologist or pain specialist but I want to know if anybody else experiences the crps in this way before I look stupid suggesting it?

I also have experienced horrible tmj issues along with migraines since breaking my neck.

Sorry for the extremely long post but I tried to be as thorough as possible.

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  • Posted

    I cant really help as i dont have crps but I just wanted to say im so sorry for you. I have chronic pain but no where near as bad as yours and dr cant figure out why either and I know there is nothing more frustating than not having answers. Im so sorry you went through that, being pregnant and having a baby is hard enough without being ill or in agony too.

    Im guessing you have tried most of these but here are the drug options for pain i have read about and tried some of: gabapentin, pregablin, amytriptlyn, nortriptlyn, duloextene, carbamazepine, wellbutrin, finally marajuna.

    I cant speak for crps patients but hopefully someone here can give you some advice. I do think though that seeing a pain clinic is a priority for you and am shocked you havent already been reffered. A neurologist may also be helpful but in my experience looking outside of a tumour or an actual disease like MS, Parkinsons they are pretty useless.

    Have you had inflamatiion marker blood tests? If your swelling up is there a chance you have RA or polymyalgia. Has anyone tried you on predlisnone. Sometimes pregnancy/birth can bring on an autoimmune disease which perhaps just coinsides with breaking your neck.

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    • Posted

      Thank you for responding. I'm sorry that you also have to suffer from chronic pain. It's a hard road and one that's hard for anybody that doesn't have it to understand because it's not always something that family or loved ones can see. Even doctors I feel don't understand because it's not something that's right in front of their face so I feel like I just keep getting brushed aside.

      Out of the medications you listed I have only been on gabapentin..that was one of the medications the doctor prescribed to me for fibromyalgia. After I quit going to him I had a really bad day and happened to have gabapentin sitting right there on the table next to me and I just wondered if it would help and I took about 5 of them in desperation. It did seem to help. I do not have an active prescription for gabapentin but I get them from my dad who also has back problems and they do seem to help me some. Particularly with the leg cramps it seems.

      The guy who did my nerve conduction test and diagnosed me with rsd in my hands said my only other option at that point would be to go to pain management. I have been putting off pain management as long as I could because both my dad and grandma go to pain management for their backs and they're so doped up all the time that they just stay in bed and I have 2 kids and cannot afford to be doped up on pain medications all the time. So I've just been suffering..but this is the worst it's ever been and I can't put it off anymore.

      I have not had inflammation blood marker blood test done. I've never heard of it before. I do have another appt with my doctor coming up and I'm going to talk to her and see what the next step is but like I said I didn't want to mention the possibility of it being crps and sound stupid if it doesn't follow the symptoms.

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    • Posted

      Yes it really sucks, i have the same fears as you with medication and being doped up. I manage without and waiver constantly with being certain im going to go on it and then backing out but I have tried gabapentin, pregablin. I didnt get on with either but i know they help some people incredibly.

      You need something to help you, definitely get your markers for inflamation checked, thyroid to as thats another thing that can go out of whack after a baby. Then ask for referral to pain clinic, you may as well go, you dont HAVE to take what they suggest but at least you know your options. I had a cervical facet injection through pain clinic. Didnt help me but there are more than just medication options in some cases. 

      I think your GP can prescribe amytryptlyn and nortryptylin maybe gabapentin, i think the rest might have to be initially presctibed by a specialst in order to get a repeat prescription which your GP can then fill. These meds dont work like a painkiller though, they take time to build up and can sometimes take weeks to have a full effect. Why dont you ask GP to try nortyptlyn, i dont think it is supposed to have as many side effects as amytriptlyn, that might at least see you through until you have a pain management appointment and blood tests etc.

      When you see the GP just tell them you are in agony and need some answers and something to help you and you need it now. Have to say though the standard treatment for unexplained pain or nerve pain seems to be either the antidepressanst or anti convulsants. If an autoimmune disease is at work then there are other things to try like steroids or hydroxycloriquine. (spelt wrong).

      Good luck and dont worry about looking stupid, these drs dont know that much themselves otherwise they would be able to tell you what was wrong. 


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  • Posted

    You mention that you're worried it may not be CRPS because the truly horrible symptoms are not constant. I've had CRPS for 20 years. I have days that I can function normally. It still hurts, of course (it ALWAYS hurts, but I'm able to put on a happy face, run errands, pretend I'm normal... And then I have days that I'm stuck in the fetal position, lying in bed, unable to move because it's just too much. Some days my limbs swell; some days they don't. My foot did the skin and nail changes, but my hand never did.

    My point is that you don't have to have ALL the symptoms for it to be CRPS, and what you have sounds an awful lot like it. You're certainly not going to sound silly suggesting it.

    I can also (hopefully) put another of your fears to rest. CRPS patients don't get 'high' off their meds, though sometimes I wish I could. I have two young children myself--rambunctious li'l boys, and I'd never do anything that endangered my ability to care for them...BUT I take my meds. All of them. As often as I can. Because they take the edge off and ENABLE me to care for them. I am a better mother when I'm not crying from the pain. Pain patients don't get the same doped up, high feeling from meds. We can only hope to feel normal.

    I'm sorry you're suffering. I hope you do see a pain management doctor as they are the best option for CRPS care. I'm 20 years in and have tried them all.

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  • Posted

    yes you do need to go to another dr. either a pain mgmt. dr. or a neurologist.  i am in a facebook help group i think you could get help.  is called CRPS, RSD N Me support group.  i pray you find answers.
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