Frustrated by lack of diagnosis

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Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 2/20/2017 7:43 AM (GMT -7)   
Hey all,

First post here, sorry it may be a bit long.

June 3, 2015 was when my life changed dramatically, and not for the better. It started out simple, after exercising in the morning, and doing various things I noted my right foot, specifically the ball of it, was tender. Now, I'm a huge clutz, and can trip over nothing, so thinking nothing of it I decided to ice it, rest it, and just take it easy. No biggie right? I wish I could go back in time and smack myself for that thought.

Obviously, it was a biggie. What once was a tender ball of foot, turned into a numb, angry hateful entire of foot and ankle. The pain was white hot electric, super sensitive to any, and everything. Not able to bear weight we went through the usual channels, getting X-rays, and a bone scan because the doctors thought I had a hair line fracture.

Its now February of 2017, and you can guess who's become my new 'best friend', yep. Pain. I've been through many tests and many, many months of hitting my head on the wall. Here's the sample:

Currently on:

Effexor for depression (pre-pain depression that's obviously not gotten better)
Trazodone for insomnia (chronic, pre-pain, that's not getting better either thank's pain).
Adderall for ADHD
Cymbalta (THAT'S FOR PAIN! DING DING)
Amadolpine (that's for pain too I'll explain) - My feet are ice cold, the doctor gave it to me to dialate viens in hopes that some circulation gets down there, because cold makes the pain worse. Did I mention I live in friggin Canada? Yeah. Cold. Lots of Cold. Ugh. Why?
Vitamin B, D, C, Magnesium, Cranberry, multiviatmin...I'm missing one I think...gah!

I have been on various pills, nortryptilne (sp?), lyrica, gabapentin, amatryptyline (sp?), tramadol, tramacet, percocet, tylenol extra strength-t4's, morphine, and the list just goes on.

I've used various topical creams, starting with the usual tiger balm, going to capcasician (sp), and then lydocaine. They just make the pain worse.

The pain, my dear friend the pain, its in both my feet, ankles, and now my left wrist.

I've seen countless ER doctors, a poditrist, a pain clinic doctor, a few walk in doctors (when I really needed to ), my PCP, pysio-therapists.

Nothing works. I'm waiting to see a neurologist to do a nerve conduction study, as somewhere my nerves are sending a message to my feet (or my feet to my brain) that there is pain. All tests have come back negative, no matter how much blood they take, how many times I pee in a cup, CT's, Xray's, Bonescans, poking, prodding, jumping up and down, etc.

I'm exhausted. So very exhausted. The pain makes my brain foggy, and so does meds. The pain clinic doctor was about as helpful as wet toilet paper. He gave me nabilone (which did help for a bit), told me it wasn't Complex Regional Pain syndrome, and that he was releasing me back to my PCP, because he didn't know what it was and couldn't help me. Uhm...Okay? What do you mean? You're a pain clinic, I'm in pain. Uhm.. Help?

We are moving soon, as my wife is military and when they say move you move. I'm a 27 year old woman, who previously was physically healthy, even though my brains are a bit scattered. The pain is so intense, I'm so helpless. Because I live in Canada, I have to get my PCP to refer me to specialists, and then wait to see them. Fine okay, but, my PCP has attended many clinics on chronic pain about how narcotics don't help chronic pain. So he's very reluctant to prescibe them. Obviously we've tried many other drugs, as I didn't really want to be on narcotics, because of the risks, and for a while I believed I'd just wake up and get better one day. Finally he admitted, that at this rate, it was highly unlikely for me to spontanously get better, and when they finally figure out what's wrong, that I was probably going to be living in some sort of pain for a very long time. That's okay, I'm okay with that. Except my pain isn't managed at all.

I can't do physio because of this, they are very reluctant because I have no real pain management system (I deep breath, I take a hot bath, I make silly noises and my wife playfully mocks me to make me laugh, I go to the ER when things are so bad that my brains are screaming and about to explode.)

I have no quality of life. There are times where the pain 'remits' and goes away, but it lurks around the corner and those times are becoming very short lived. I haven't a clue what's wrong. I research various things, offer suggestions to my doctor, he talks to me about them, orders tests, and I 'fail' (or pass?) the tests, and we're back to the whole "I don't know" thing. We call my pain 'chronic neuropathic pain" but that's only because he needs to describe it in notes, and its not a firm diagnosis, its an observation of my symptoms.

I'm hopeless. I don't know what to do, how to get pain management. At this point I'd take anything, anything just to get the pain under control, not gone that's unrealistic, just controlled enough to be able to -enjoy- life again. I certainly have bad and good days, and of course relish the good days. I do a lot of positive thinking, and reassuring myself. My wife is supportive, but it's been hard for her to realise the severity, and until my doctor spelled it out to her that there was potentially no cure, and a good possibility of this being my life, she was insistent I'd get better, so I never got to grieve properly for my former, more active, fun loving life. We're both still getting used to this, and she's a terrible house keeper, but she goes to all my appointments, asks questions, tries to help when I forget symptoms (so much forgetfulness ugh), and tries really hard. Its hard on both of us. I just don't know what to do.

I have no diagnosis, I have no management of pain, doctors are freakin' useless at times, and I'm at the end of my rope, my pain is so severe I'd not wish this on my most hated enemy. I just want -some- relief, to be able to even go to the bathroom without sobbing because of the pain (in my feet, not using the facility). I went from being able to walk with aide, such as a crutch, or cane, to a wheel chair in four months. I still can walk, and do so at home, but its so painful, walking any real length of distance is a no go, my legs get weak from the fact my feet can't bare any weight and I go down like a sack of bricks. I use a manual chair, because I refuse to go to a powered one, I have two arms, and I'll use them.

I have a doctor's appointment coming up, and honestly I'm hopeless. I want to ask for something stronger than just the 'entry' level pain killers. But, I'm scared to hear another no, that narcotics aren't the answer. Well nothing else is the answer either! What am I to do?!

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 680
   Posted 2/20/2017 8:44 AM (GMT -7)   
Lessa Rayne:
Your narrative is a sad testament to the many failings of modern medicine.

Physicians have become increasingly dependent on imaging in defining health ailments. Fewer and fewer physicians give of themselves the time and focused attention to look beyond visible imaging tools in making a diagnosis. Which is ludicrous, as imaging techniques only explore the physical, structural, and anatomical possibilities of what may ail a person. Diabetes, multiple sclerosis, auto-immune conditions, Parkinson's, inflammatory bowel disease - none of these are visible on imaging studies. Does that make these conditions any less real?

Here is the modern health care conundrum: Unless one's illness/condition is visible on CT or MRI imaging . . . it does not exist.

You may have a condition of the sensory nerve pathways that is causing your pain. Sensory nerve pain would not be discerned on CT, MRI or x-ray studies.

Have you had an EMG study of the lower legs - looking at the motor and sensory nerve conductivity?

Your physicians need to look less at physical/anatomical/structural causes of your foot pain and more at physiological/functional/how-the-body system is working to source possible root causes of your on-going pain.

And then . . . at some point in time . . . it becomes less relevant to answer the questions "What is the cause of my condition/pain?" and "What is the name/diagnosis of my condition/pain?" and the more relevant concern becomes how to quell the life-affecting and life-impacting symptoms. The focus shifts from defining a diagnosis to finding options to quiet the disconcerting symptoms.

I would think that you are at this point. Less interested in pursuing a diagnosis (where medicine has already failed you) and more interested in defining solid and meaningful ways of mitigating the pain and distress that you feel so that you can become more ambulatory and functional and participatory in life.

All you need is one physician who will partner with you to find a modicum of relief to help lift the veil of despair that you feel. Just one caring physician.

Of the many physicians that you have seen, is there any particular one (or two) that seemed to be more authentic to your case and more giving of their time and thinking to your care? If yes, I would suggest an additional visit with said physician(s). To lay out your case . . . that you are desperate for amelioration of pain to give you a toe-hold back to being able to participate in life.

I can relate to where you are. I have advanced avascular necrosis of both of my hips, due to high dose/long-term corticosteorid use for Addison's disease and mixed connective tissue disorder. I knew the ravaging effects of corticosteroids going into the situation. I had no other options. Today, I am paying the price of the benefits that the corticosteroids provided me at the time.

Due to severe osteoporosis, I am not a candidate for total hip replacements - as would normally be the first line option for avascular necrosis. My overall health is fragile due to endocrine failure. And yet, my body is resilient owing to years of my passion for long-distance running (10 K and marathon distances).

I look at varied options for managing the severe, on-going bone pain. Accupuncture. Aquatics and swimming program in a warmed therapy pool. Intra-articular injections of plasma cells and undifferentiated stem cells. TNS unit. Hyperbaric oxygen treatment. Cold. Heat. Physical therapy for tissue mobilization, massage, strengthening. Varied medications.

In the end, I did come to accept a narcotic cocktail consisting of the fentanyl patch and oral dilaudid. I am on Palliative Care. The narcotic cocktail that I receive is authorized by a four-tier panel (state narcotic review board; Palliative Care review board; medical insurance provider; prescribing provider + independent pain management physician). My narcotic cocktail has been authorized for the next 12 months. Which is amazing in and of itself. All to say: There are endless hoops and detours and side-ramps in gaining access to and continued access to prescription narcotics.

But when you need narcotics, you need them. My life is a mere shadow of a "normal" life. The narcotic cockail keeps me from going mentally insane due to the meteor storm of pain signals that I would experience otherwise. The narcotics allow me to be upright and walking - which is so important to me. Walking is my oxygen.

If you have not had a trail of a low-dose extended release narcotic, perhaps now would be an appropriate time to ask and to consider. It sounds as though the pain in your feet and lower legs is rendering you more and more homebound.

There American Pain society has an illustrated/pictorial functional assessment scale that I have found to be very useful in communicating to my medical providers as to how pain affects my day-to-day life. You might find this illustrated pictorial assessment useful to use with your physicians, as well. It really enables others to "see" how pain is affecting you.

Let me come back in a few minutes with the posting for the American Pain Society functional assessment.

Your written narrative in your post/thread is both sad and powerful in its effects. I would encourage you to take a printed copy of your narrative to your physician at your next appointment. Let him/her read your words just as I am. Perhaps you will get a more sensitive and empathic response to the plight that is your feet.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15322
   Posted 2/20/2017 11:16 AM (GMT -7)   
Hello Lessa & welcome to Healing Well. First off, do not give up hope, there has to be a dr out there that can help you. I see you have an appt coming up with a neurologist for an EMG. Hopefully the EMG studies will shed some light as to what is going on. If this is in fact neuropathic pain, pain medications have little to no effect on true nerve pain.

You mentioned trying different medications used to treat nerve pain. I don't know how long you were on them or at what dosage. However, with those type of medications it takes time to figure out the dosage to get to the therapeutic level needed to help. Judging by what you listed above it seems they were thinking this is a nerve problem.

I understand the fear of asking for something stronger in pain medication. Unfortunately, people that suffer with chronic pain are in a real limbo here in the states & it has spread to other countries as well. We have the CDC, NIH & DEA calling the shots on what a pain mgt dr can & should not rx for pain. It is getting tougher by the day. This is why a pcp that once rx'd pain meds will no longer do it, they are in fear of losing their licenses, this includes the pain mgt drs.

Keep us posted on what you find out with your dr. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

littlemary
New Member


Date Joined Feb 2017
Total Posts : 4
   Posted 2/20/2017 1:46 PM (GMT -7)   
I understand, my right arm swelled up so bad like a three times the normal size, my fingers were crippled, this all happened on my right side, I was throwing up and just could not move. This happened to me very quickly on August 16, 2016, and I was found by my son. He took me to ER and I was admitted for cellulitis and a staph infection. I was treated for the pain and lots of antibiotics, have plenty of tests, they did find that i had a stroke in the cerebulum region, which the doctor said was old, i think i had a silent one in April of 16, however I could not move my right hand at all or my fingers, seeing 17 doctors I was given 3 dxs, which none where right. after spendind 13 days in the hospital the only improvement was the swelling had gone down on the right hand, the pain was so awful going down my arm into the hand and fingers. It took me seeking out doctors on my own who told me that the problem was not coming from the neck, which they thought, 2 neurosurgeons told me it was in the arm. I went to a hand doctor who dx me right away with CRPS, sent me to a pain dr. who said the same thing. I was given 2 nerve blocks which really helped the pain coming from my upper arm down to my wrist. Now he wants to put a stimulator in my back, which I am not convinced will help me move my fingers, I am doing OT theraphy, use procardia ointment on my hand and can move my fingers some. I just went to my hand dr. who now thinks i am dealing more with RA and Raynauds. I have been dx. with severe osteoarthirtis in my fingers which have nodules all over them. I have had right hip replacement since i was bone on bone from good ole arthur. He has refered me to an RA doctor which I am waiting on a phone call for that, so to say the least i am confused. My right hand and fingers stay so cold, swollen and painful. So this has been gong on for 6 months.

Meds:Cymbalta 60mg
Neurotin 1800mg
Norco 10/325 3x day
Seroqeul 50mg

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 680
   Posted 2/20/2017 4:53 PM (GMT -7)   
LittleMary:
You have been through quite the wringer yourself. With, apparently, little clarity from your medical providers.

My opinion: One of the most glaring failures of our medical system is the failure securing and providing an accurate and correct diagnosis.

The failure of making an accurate and correct diagnosis then morphs into unnecessary and, sometimes, inappropriate treatments and procedures and medications. And, once an inaccurate diagnosis is made, the diagnosis and label sticks to an individual like fly paper over time. An inaccurate diagnosis can continue to follow a person indefinitely because physicians have a tendency to avoid challenging their peers and colleagues.

I think I have had more inaccurate diagnoses rendered on me than accurate diagnoses. The number of wrong diagnoses outnumbers the correct diagnoses. It is disheartening.

LittleMary . . I wonder if you would like to start a new topic and a new thread of your own so that your needs are addressed separately from the original poster Lessa. You each deserve of your own space and your own platform for expression and to receive responses of support from forum members.

Welcome to the forum. I hope that you find the support and hope that you deserve here in order to work toward a better tomorrow.
- Karen -

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 680
   Posted 2/20/2017 5:03 PM (GMT -7)   
Lessa:
I promised to get back to you with information on the functional ability scale/assessment.

The "Ability Scale" is provided by the American Chronic Pain Association. It is an illustrated/pictorial functional ability scale that identifies how ongoing pain impacts one's life across several functional parameters (ex. walking; climbing a flight of stairs; bathing/showering; preparing a simple meal; ability to engage in a hobby or avocation).

www.acap.org

Download the "Ability Scale" from the menu of available resources.

- Karen -

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 2/20/2017 6:30 PM (GMT -7)   
Sorry if I'm slow to reply, bad pain day and all. I am waiting for an Emg, but as I'm not considered "life threatening" I'm lower on the wait list here in Canada.

All the meds I've tried have been slowly used, one at a time starting small and working our way up in diseases, taking time to evaluate. Some of them I had to stop because the side effects were just so bad I began to resent the pills.

My general practitioner is a great doctor and he is trying. But as many of you know chrono ic pain is hard. They do suspect it is nerve pain as there have been no physical signs (all physical imaging comes back clean). So that leaves nerves. I feel like I'm crazy like it's in my head.

Stress and depression make it worse, which is hard because obviously with little management I'm stressed and depressed from the pain. I've been on 90mg of cymbalta for a year and it takes the edge off, most days. So my pain is slightly less unbearable, but not enough to be considered giving me a life.

I am homebound, mostly bed or couch ridden. It makes me sad, I love swimming but cold water or even cool water makes my pain worse, so no pools, and no natural water ways. I try very hard to keep my strength up, as my doctor is concerned that if I don't try to use my feet and legs it'll only get worse.

I had an occupational therapist assess me, for my wheelchair and agreed I have no function. Thankfully we were able to get many devices to make life a bit easier at home. Stool for use in the shower, a nice grab pole to heft myself from the bed. My wheelchair, etc. My doctor got a copy, and monitors my level of ability very closely. Having me stand, and preform other tasks routinely in front of him. He is a newer doctor, which I chose in hopes that he wouldn't be stuck in his ways, or use old and sometimes outdated methodology.

He's an amazing physician, and listens and respects that I research online thankfully. We come up with various care plans and put them to the test.

Stray dog - Canada doesn't have all those legislations yet. Doctors use triplicates for certain classes of meds (one copy to pharmacy, one for the doctor and the other I believe goes to the govt). He has said I take each treatment plan very well and am very compliant, so he doesn't worry if I have a spike and run out of meds early. He's great that way. If he wanted to count my meds I'd let him, but I'm on no contracts. He even wrote a letter to our local hospital explaining that I am not a drug seeker and they are to treat my pain when I come in, because it is severe enough to require treatment. All the er doctors know this and many know him personally and know me kind of well now. It's getting to the point where they just come in and go "the usual?" And I nod.

One of my many issues is I was raised very much there's some one else worse than you. It's hard for me to let people really see how much I'm suffering, my wife sees it and advocates. I put on a brave face, but have actually cried and yelled at doctors for their lack of compassion. I explain to them if I break down and just be miserable I'd never function and to open the well would cause it to never close again.

My doctor thinks I may have Reynaud's because of the fact that my feet are so temperature sensitive, and often frozen regardless of how many socks I put on, hot baths I take, other body temperature, outside temp ECT. I have a butterfly flush to my face, but my ana came back negative so it's not lupus or so they say.

I did get a ketamine shot at the er once and it was heaven. Yes I hallucinated unicorns and fairies, and kept saying to my wife some silly cliche wisdom. But for days after it was like someone had reset my pain. I cling to every minute. I was able to enjoy life, with minor pain, I smiled, I laughed, I did what little I could scared to push myself and lose my slice of heaven.

I'm a stubborn woman, I sometimes forget how sick I am. The other day I noticed some water on the floor grabbed the mop and cleaned it up. Sadly that put me down for days in agony, with me declaring I was an idiot for forgetting. It frustrates my wife to no end, because I end up making myself worse just trying to do simple things. Like get myself a drink, going out tends to leave me exhausted and paying for it. Regardless of my wheelchair.

I am going to talk to my Dr about getting some pain meds, he did state last visit because of my willingness to try any and everything, and not demanding narcotics he sees no issue with offering them to me, because it's clear I'm willing to do anything.

The hyper sensitivity is terrible. My lower legs hurt but if my wife or someone touches my legs during the bad days it's like hell on earth. I have to go through the painful process of desensitization Everytime I get new socks, or pants, because they hurt me so much. I have a limited amount of foot ware because of it. I actually begged an ER doctor not to touch my feet one night because he had never seen me before and wanted to do a physical examination of them. He listened and let me show him where the pain was thankfully.

Little Mary I hope you get help too. This sucks!!!

Moving to a new province has me worried. Finding a good primary care doctor is hard. Having to reget on wait lists suck. But I can't afford private health care. My wife is the sole provider, as until things are more clear I can't get on disability and that takes forever and is a fight in and of it's self, which h honestly I don't have the energy for.

Nerve pain is hard, I only get morphine at the hospital through injections and because it's not regular i don't get a chance to build it in my system so it never fully helps. I want to ask about long asking pain meds, like OXY, but I have worked at an addiction centre and seen what that stuff does to people. I'm scared to brooch it because my father and mother have had addiction issues in the past. My doctor knows of course, I don't keep these things from him. The only medication I've ever had issues coming off of or weaning to a lower level is the darned trazodone.

That stuff makes me anxious and very panicked if I lower myself quickly. Because I'm on so many SSRIs my doctor wants me to lower my trazodone or quit it. Which is difficult. I need sleep.

Thank you all for your advice and kind words. If anyone can help me with how to brooch my Dr that'd be lovely.

pitmom
Veteran Member


Date Joined Jan 2015
Total Posts : 2186
   Posted 2/20/2017 6:47 PM (GMT -7)   
There was a recent thread about painful skin patches...one of the responders mentioned 'Allodynia', which sounds very similar to what you are describing. Might be worth checking out.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 2/21/2017 2:44 AM (GMT -7)   
Thanks Pitmom I'll look into it. Currently I've been in tears today and sounding like I'm about to sing the starting song from the lion King. (My wife's words not mine, as she held me and was there for me lol). The pain is so intense today I'm confused what time it is. But I will bring up allodynia to my doctor.

I'm defeated, and going to the ER is not an option because I have a very important meeting on Thursday and I cannot be out of my gourd on meds for it, so I'm trying to just get through this week with positivity, breathing and lots of rest. Really though I feel about ready to scream and curl into a tiny ball under a rock. Ugh

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15322
   Posted 2/21/2017 5:58 AM (GMT -7)   
Lessa, does your feet & pants hurt when clothing touches them? How about bedding does it hurt your skin? Do you have discoloration of the skin, or is the skin shiny?

You mentioned Ketamine injection helping. Not sure about there but people with CRPS are often treated with Ketamine infusions & get relief provided they do not have bad side effects from it. It takes a pain mgt dr that is well versed in CRPS.

You are very lucky to have such a good PCP in your corner. I can understand the fear of moving. I hope you get some answers & soon.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 2/21/2017 6:03 AM (GMT -7)   
Yes, the slightest breeze hurts. But in the province I'm in the doctors have very specific criteria to diagnois CRPS and my stupid feet were not discoloured when I saw the pain clinic doctor. Which meant that I failed the diagnosis (even though I tick other boxes go figure). I'm hoping that when I move and go to a new pain clinic that I'll get a better doctor. He was a true jerk to me.

My feet go blue, purple, red, death white, waxy, they feel kinda weird too like...Not real flesh. If that makes sense? A physiotherapist thought it could be CRPS at the start of this journey, and told me to watch for those symptoms. My previous GP (who I switched from because he was an hour and a half away and not as good as my current) agreed that CRPS was likely. Even my current GP did until stupid pain clinic doctor. Now we're just unsure. I don't want it to be CRPS. But I do, because then ketamine and other treatments may be able to give me my life.

Also, because I don't swell the pain clinic Dr stated it couldn't be CRPS. But I have lost so much muscle mass, and when I do swell it doesn't look very severe, even though my toes will lose their creases where my joints are. I just don't balloon up sad

Fusiongirl
Veteran Member


Date Joined Apr 2012
Total Posts : 608
   Posted 2/21/2017 8:56 AM (GMT -7)   
Hi Leassa, when I began reading your post the first thing that came to my mind was CRPS. I've been a member of FB chronic pain sites and everything you've said sounds familiar. I thought I had CPRS after I broke my leg in 2008, skin changes, sensitivity and awful pain. But I was lucky it got better.
I know ketamine infusions are a treatment for CRPS, and the fact that helped you makes me wonder even more. From what I've gathered it's not something that will show up on a blood test.
I really do feel for you. You can only hope that a new state and new doctors may bring up some new ideas. I hope so as living with chronic pain is hell. I'm in Scotland and we are like Canada, not having the issues America does. But I can't help thinking that worldwide there will be changes. Personally I think America are taking it too far.
My problems are back and knee related, I'm mostly under control. But I found on the levels the doctors wanted me to be on I just could not function. So I decided to reduce my medication. I live with a bit more pain but I'm not so sleepy and my head is definitely clearer.
Good luck on your move, hope it leads to answers.

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 2/21/2017 9:18 AM (GMT -7)   
It does sound like CRPS and it fits. But because of no colour change and no extreme swelling the pain clinic Dr decided it couldn't be that. When asked what he thought it was he was all "I don't know but you don't have CRPS because your feet arent discoloured or swollen." Like sorry that my feet arent purple! I even showed him pictures but because he didn't see it right then and there it didn't matter. I left the clinic sobbing and felt so hopeless. I just want my pain to be managed, and the demon I'm fighting to have a name so I know if I'm bringing a knife to a gun fight.

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 680
   Posted 2/21/2017 9:57 AM (GMT -7)   
Lessa Raye:
I suffered from Reflex Sympathetic Dystrophy (RSD) after a 3rd knee surgery for an anterior cruciate ligament repair gone awry. The surgical trauma was too much for my knee and associated sensory nervous system.

I believe RSD is now considered a sub-set of CRPS.

I found little support or treatment available in the traditional medical community and physicians and clinical providers.

I did find a great deal of support and assistance and treatment with a skilled physical therapist and acupuncturist. Physical therapy and acupuncture gave me the means to regain functional use of my knee and leg.

I will not tell you that recovery it was easy. It wasn't.

I will not tell you that it was without pain. It wasn't.

But I did start to make small improvements. And the series of small improvements over time provided me with the stepping stones to reclaim my leg as my own.

I forced myself to walk on my leg. I am a big advocate for moving and using the affected limb. Despite severe pain. The more I used my leg, the more I walked, the more I stretched and moved . . . the better became my situation.

I discarded the walker and wheelchair provided to me. I forced myself to take weight on my leg.

And what I found was astounding . . . weight bearing on my leg began to desensitize the hypersensitivity that ravaged my knee and leg. Weight bearing became my friend. It became my friend by providing a constant and even stimuli into my aberrant sensory nervous system. Weight bearing provided my brain with a known and better sensory input than the malevolent sensory signals emanating from the skin and soft tissue of my injured knee/leg.

My advice to you: Challenge yourself to stand and walk. Start small. Maybe only one minute. But begin to take weight on your feet and legs.

I also used alternating cool/warm water immersion baths for my leg/knee. Alternating 5 minutes in a bath of cool water followed by 5 minutes in a bath of warm water. The alternating vasodilation and vasoconstriction has true value. This of it as exercise for your sympathetic and parasympathetic nervous systems.

Use of a snug compression wrap on my leg and knee was also helpful. I used a brand of TED hose (anti-embolism stockings) for my leg, using a full-leg stockinette. You can explore anti-embolism stockings for your feet and lower legs. The premise is that the compression dressing is like swaddling your feet and legs as you would swaddle a crying baby. A compression dressing quiets and quells hypersensitive nerve endings by enveloping them in a constant pressure. You could also try wrapping your feet using Coban or an ace bandage or Kinesiotape. You want a snuggling effect, a hug for your hypersensitive feet.

I did not find much value in the medications often prescribed (Neurotin, gabapentin). Keratime infusions were not available when I endured the RSD of my knee/leg. I did have some Ultram (narcotic) so that I could get some sleep at night.

I did not sleep with sheets on my bed. I wore pajamas with shorts to avoid fabric on my leg/knee. I often wore shorts during the day, even in the winter, to avoid fabric and clothing on my knee.

I often wore Burkenstocks as favorite sandals. You might see if a pair of Burkenstocks would be comfortable for your hypersensitive feet. They are open toed and roomy and the ergonomic soul of the foot helps relieve pressure points. I love Burkenstocks.

See if any of these ideas might be of benefit to you.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15322
   Posted 2/21/2017 10:23 AM (GMT -7)   
Lessa, CRPS is caused by an injury, trauma & surgery. I have to wonder if you hit your foot on something without realizing the full impact. Several of our clients developed it after having surgery to a limb. This was in the 80's & nothing was known on how to treat. The drs that were treating patients were pain mgt drs. Back then it was called RSD & later the name was changed to CRPS.

I am not a dr, none of us are for that matter. I am not convinced this isn't CRPS. You do not have to have every single symptom of it. It can be dx'd by eliminating other conditions too. But again, it has to be dx'd by a dr that know about the condition. The PM dr you saw was not interested in you at all as a patient. Unfortunately, there is no real test that can dx it, its a process of elimination of other conditions & your symptoms.

I suggest that you go online to reputable websites such as teaching hospitals where you live & print off info & take it to your PCP. Karen is so right you do have to keep moving your feet. Do not give up on this.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 2/21/2017 10:44 AM (GMT -7)   
Seashell - I do walk at home and weight bear at home. I also do walk in small stores. I cannot do large stores or long walks. Regardless of how long and how hard I push it does not bode well. In fact the longer I walk the worse the pain becomes until I completely collaspe, and then the pain will punish me. I tell myself to get over it. Walk it off, I'm a big fan of walk it off for myself, I use it on most of my silly little things I've done to myself over the years. Sprained ankle? Walk it off stiffen that upper lip. This pain I cannot push out of myself, no matter how many deep breaths (too many and meds make me dizzy ack!). It sucks, because my wife and doctor see me struggle, they watch as I push harder and harder to reclaim what I lost. I rarely give up but I am learning to accept limitations, if only because if I don't the pain punishes me in ways I can't even begin to describe.

I am a tough chick, I burned my leg in a motor cycle exhaust pipe, and despite 1st, 2nd, and 3rd degree burns to my ankle I walked it off u til my father (I was 11 at the time) noticed I was dragging my foot. I didn't cry, I barely make a peep.

I have a bad habit of spraining my ankles, and even my worst sprain I walked on it the very next day despite the fact that I could barely put weight on it. I simply sucked it up and plodded on.

I worked with a gall bladder that was infected and filled to the brim with stones, until I was so weak from throwing up, not eating, and pain I almost passed out at work. A week after having it removed I picked up a 100 pound dog that had been hit by a car, because I wasn't going to let it suffer. Pulled a bunch of stitches, got it checked out to make sure I wasn't going to bleed out and walked it off. This pain knocks me down in ways I never knew possible.

I cannot use compression, it causes worse pain. I use warn socks. Our sheets are incredibly soft on my skin and cause no irritation. I wear only clothing that my body can with stand. I try and be as normal as I can, despite my wife's best efforts to get me to stop and think before I make things worse.

Cold is my enemy only hot soothes, and only some times. Cold is like setting every neuron in my legs on fire by sending my legs onto the sun. I have found some foot ware that works for me, thankfully they're higher quality so they won't wear out anytime soon.

I'm sorry if this sounds defensive, I'm tired of doctors and people telling me basically to walk it off and push myself further. I do every single for day, even if I slowly walk from the bed to the bathroom tears streaming down my face I do it. I got told off for limping, so I force myself to walk with as little limp as possible, it's almost impossible but I do it. I grit my teeth and bare it.

I'm very glad that you were able to get through your pain and rehabilitate yourself to the point where you can manage despite the pain, however, at this time I cannot. I take it as a personal failure, and I'm very hard on myself about it pushing myself despite the fact that medical professionals, my wife, and my own body tell me not to.

I am bedridden and couch ridden only because rug burn hurts, there's only so many times one can hit the floor before it really starts to leave bruises. I don't give up and I won't, I'm determined to live a normal life, and I'm so angry at my body for failing me at such a young age. It is a great blow to my ego to have to request pain medication stronger than what I've tried, simply because the things I've tried should (in my mind) work.

Being sick is hard, the physical therapist will not treat me because the pain is out of control. I believe in only science based medicine and from what I've read sadly acupuncture isn't better than placebo. Plus if it is CRPS, the last thing I want is more needles or any risk of injury to allow the disease to spread. When I do get things like tramadol, I take the least amount. When I've had Percocets I break them into halves and quarters (they're usually the 5mg) to make them go as long as I can with as little meds as possible. Simply because I've been raised that there is someone always more worse off than I and that I just need to buck up.

I appreciate your advice, and understand that not everyone is treated the same, and not all people respond the same to different treatments. I hope I don't offend you, I just go through this fight with doctors, and well meaning people (such as yourself) so very often.

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 2/21/2017 10:55 AM (GMT -7)   
Stray dog it's entirely possible I did hurt my foot and because I'm a walking disaster, and so klutzy I just shook it off and didn't think much of it (nor remember it because well...I trip over nothing lol). I'm not convince it is or isn't. I've don't a lot of research on CRPS and feel like reopening the discussion with my doctor. I don't want it to be CRPS, I don't want it to be anything that won't go away. But that's not realistic, I do keep moving, and ensure even if I can stand on my feet that I stretch them, move them and even gently massage (if I can stand it) to keep them going. I vary pressure and will sometimes just press them into the floor slowly, and then pick them up. Walking while sitting basically. I don't want to give up, but I feel that if I left my dog in this much pain the humane society would take him away and throw me in jail for cruelty. I've pointed that out to doctors, that a child or even a pet in this much pain would be considered abuse. I just want to be able to function enough to be able to press on and fight the good fight so to speak

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15322
   Posted 2/21/2017 11:55 AM (GMT -7)   
I asked before I think, does your skin on your feet & legs ever look shiny? You seen to have a good relationship with your pcp this is why I suggested printing off some info about CRPS & taking it with you to an appt.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 2/21/2017 12:02 PM (GMT -7)   
Stray dog my feet do look waxy or shiny sometimes. They kind of feel like how I would think robotics skin feels to be honest. The skin doesn't feel like it belongs to my feet. Also all I can sense in my feet is cold and pain sad lame right?

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15322
   Posted 2/21/2017 12:06 PM (GMT -7)   
I have known & seen many people with this & they all had a shiny look to their afflicted area. Back when they first started treating this in the 8's the pain mgt dr a test called a thermogram, it would show the variance of the temperature of the skin on a graph. Of course they no longer do that now.

I really think its worth taking some info to your pcp & discussing it with him again.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 2/21/2017 1:49 PM (GMT -7)   
Thanks, I'm thinking I will. Back when this all started the podiatrist checked the temp or my foot and it was a whole four degrees colder than the rest of my body. Which she was shocked about. I understand that our limbs can be cooler than core because of the distance from the heart but four degrees is pretty significant.

My physiotherapist friend warned about waxy/shiney feet, and relating to CRPS. Honestly lately I have been in a rut about what to do. So frustrated that my body won't preform to fail a test and cause a blip. I had low B12 and I was excited to hear that because I was like "it's something right?!" The doctor got me to take B12 and while my levels are now normal the pain didn't go away. Darn. Lol.

I'll start preparing my usual package of information for my doctor on conditions I've looked at. I'm pretty sure he's just keeping them in a binder for future reference at this point, hehe.

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 680
   Posted 2/21/2017 5:09 PM (GMT -7)   
Lessa Raye:
I was giving myself as an example of someone with severe reflex sympathetic dystrophy who was able to make it through to the other side. I offered myself as an example not to make you feel as though you had to follow everything that I did but rather to provide you with some ideas to consider and try.

Let me make myself clear . . . the RSD that I experienced was to my right leg was severe. Three knee surgeries within three months was enough for my nervous system to object, and to object loudly. RSD was my nervous' systems response to an unscrupulous orthopedic surgeon who did shoddy work in repairing my torn ACL and to the two subsequent surgeries (by a different orthopedic knee specialist) to repair the poor work of the first surgeon.

I hear you loud and clear regarding the severity of pain with RSD/CRPS. The pain I experienced was off the charts. The intensity of the pain was beyond describable. Days were a complete blur. I was a zombie, going through the motions of trying to life my life while my leg was literally screaming in pain.

I found little support with traditional medicine. It was physical therapy and acupuncture that saved my leg and that saved my sanity.

The bulk of my recovery from RSD/CRSP took a little over a year and a half. I still had residual neuorpathic pain for about 2 years after that, but the neuropathic pain was more of a nuisance than a full-front pain assault.

Think of CRSP as analogous to a downed overhead high voltage electrical wire. The severed electrical wire sparking with powerful electrical impulses.

My right leg shared no resemblance to my other healthy leg. From mid-thigh to mid-foot, my leg was mottled in appearance. Splotchy. The skin was taught, bright, and shiny. It gleamed like the hood of a newly wax and buffed car. My knee was grossly swollen and hot to touch. I could hold my hand a few inches above my knee and feel the radiated warmth emulating from my knee. Because of the inflammation and swelling, my knee was stiff and limited in motion - both flexion and extension were limited. My feet were often discolored - shades of white, purple, red. It was very similar to Raynound's syndrome. My leg was acutely hypersensitive to everything and anything. The cool wind of a Fall day drifting across the skin of my leg was excruciating. Any type of clothing in contact with my leg was intolerable. I was in so much pain that I eating was a chore. I lost a significant amount of weight on an already slight frame.

When I mention cool and warm alternating water baths, notice that I use the words cool and warm. I am not suggesting cold and hot temperatures.

With RSD/CRPS, the autonomic nervous system is in a state of utter chaos. Both the sympathetic and parasympathetic nervous system is in chaos. This is why trophic skin changes become apparent. It also accounts for the blanching and discoloration of the skin and soft tissues.

A few key points on regaining small forward steps in treating CRPS:
• You need to challenge the sympathetic and parasympathetic nervous system. In trying to establish order in the autonomic nervous system where there is chaos, challenging the sympathetic and parasympathetic nervous system is key. Water baths, alternating between cool water and warm water, is an excellent way to begin this process. I know how difficult it is to begin. Truly I do. But begin, somehow. Perhaps it is filling a basin of water with 2 inches of cool/tepid water (94 degree). Place your foot in the basin for 30 seconds if that is all you can tolerate. Then place your foot in a basin of water with 2 inches of warm (99 degree) for 30 seconds. It is the alternating between cool and water temperature water that is the therapeutic effect. It is the purposeful vasoconstriction followed by vasodilation that you are seeking as having therapeutic effect. You are asking the autonomic nervous system to move away from a state of chaos to a state of purposeful action.

• You need to influence the sensory and motor nervous systems to move from a state of aberrant and hyperactive signals to one of purposeful sensory input and purposeful motor output. To do this, work toward giving the areas affected by CRPS purposeful sensory input frequently for short intervals. Start with 30 seconds 10 times a day, for example. Ex. Light tapping on the skin; light compressive wrap or garment; placing the foot in a basin of rice, allowing the rice to mold around the foot, the rice providing purposeful sensory input that is different from the "sparking" electrical impulses generated when the foot is at rest. Give the areas affected by CRPS purposeful motor output frequently for short intervals. Move the foot up/down x 5. Turn the foot inward and outward (pronate/supinate) x 5. Toe raises in standing x 5. Heel-toe walk in a straight line x 3 feet. The therapeutic aim is to provide purposeful sensory input and request of the limb/foot to give purposeful motor output in terms of its movements/moving.

Good sensory input in = Good motor input out.

Above all, the therapeutic effect is to move away from a foot where it is discharging electrical impulses randomly and with high intensity to a foot where there is normalization of the autonomic nervous system.

Start slow. Even one exercise or activity or water bath in a day of any of the things that I have mentioned in my posts. It will begin to make a difference.

Clinical research suggests that people most susceptible to RSD/CRSP have had/have severe stress in their lives and/or PTSD. Severe, toxic stress heightens the hypothalamus in its sensitivity setting the stage for possible RSD/CRSP.

I know, for me, that I experienced significant toxic stress in my childhood and adolescence. I have little doubt that this stress has played a role in my development of the chronic illness that now consume my petite body. Have you any history of significant stress or psychological trauma in your life?

And, Susie is also correct in pointing out that most cases of RSD/CRSP begins with a seemingly innocuous injury to an area of the body or soft tissue. For me, it was too many surgical interventions on my knee within a short period of time. Do you recall any particular injury to your foot, even thought it may have seemed slight at the time? You mention that you have had several ankle sprains in your lifetime and that you took the approach to "walk them off." Perhaps you have had some residual pathology/injury to your foot/ankle that you are unaware of.

All to say, I hope that things begin to improve ever so slightly for you. Try to look for small successes. Build on a series of small successes.
- Karen -

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 2/21/2017 9:27 PM (GMT -7)   
I do remember that day my ball of my foot was a bit tender because I totally missed the bottom step in our house and slammed down my foot hard. Feeling goofy and dumb for doing such a silly thing I told my cat she saw nothing and while it was a bit painful (and Everytime I had to go up/down the stairs I was reminded, and for some reason that day I was constantly up and down but I can't remember why) so I decided to forgo my later in the day walk. I rested it and thought nothing of it, after all I just smacked my foot right?

That's the only thing I can think of, the doctor knows I have weak ankles, and I have told him of that. There may have been a rock I stepped on that night after I exited our car, from driving a friend home, but nothing that I would have ever attributed as life changing. I will be talking to my doctor more about this.

Im sorry for coming off so rude. I've had so many people tell me I'm not trying hard enough, when I am. I get the cool water aspect, but even like warm water is so painful. My skin is often mottled, or just this weird almost death grey/white with blue mail beds. It's not quite as shiny as chrome but has that waxy looking to it, like I have feet made of candles.

My right ankle had the motor cycle burn and that was the foot it started with. But the doctor says that it makes no sense my pain only spreads to certain areas leaving others completely untouched. It went from my right to my left, which I attribute to having favoured my right foot. But for the most part my upper legs, while sensitive, are not painful. Nor are my hips, groin or any other area that would connect my legs. Now my left wrist, which has a history of tendonitis from over doing it working hard. Once again it's just my left wrist, and not the whole left side. It's super weird and makes no sense.

I don't know if this is CRPS or if I'm just falling apart. My wife says we should just wrap me in bubble wrap, which would at least be fun to pop. My feet pop, snap, crackle, and the joins feel as though they are pebbly, like I can feel the muscles moving unsmoothly.

The other night my left foot wouldn't respond at all to commands sent to it, but then after some rest (and me stopping freaking out because it was really freaky) it finally came around. I don't swell that much, but there is swelling. My feet and lower legs don't have much meat left on them, despite my best efforts to keep them going. I'm constantly moving the joints, and while I'm not nearly as active as I was, it's distressing to look at my feet.

They look like (no offense to anyone) "old lady" feet, seeing blood vessels, discoloured, wounds that take for ever to heal. They just don't look like the belong on my body.

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 2/21/2017 9:29 PM (GMT -7)   
I should add, I have never broken any bone. Aside from gall bladder removal had no surgeries. And only had stitches for injuries twice. I tend to sprain not break. I bruise like a peach too. My leg hair grows super slow now, which is great, better than when I had to shave frequently! Not like I want anyone to see my horrible discoloured chicken legs lol

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 2/21/2017 11:47 PM (GMT -7)   
Update - Someone boop me over the head with a nerf bat. My wife and I had an exhausting day. Had an appointment, and after the appointment we decided to walk home. It's a half an hour walk, and I'm in my chair because I can't handle that distance. The sidewalks are horrible, snow is melting and the cold really tears up the concrete. By the time we get home we are both exhausted from the walk. We live on a small island and it's full of mountains, so while she was pushing me to allow my.left wrist some rest, I still helped out.

My ankles and feet are angry at me, more so than normal, because of this walk. The vibrations from the side walk, and the crisp spring air really ticked off my body. But the fresh air did my mental health some good. Anyways, because she was tuckered out she went to bed early, I tried to but the pain is keeping me awake.

Was reading some stuff relaxing in bed, when I start to feel nausea from the pain. No big deal it happens, I decide to go for ginger ale, over some gravol, because it's not terrible, and honestly I prefer to try with the least amount of meds first. One problem, my wife forgot to bring the ginger ale up to the main level from our entry. I know where it is, I don't go down to the entry often. (I don't leave the house much...) But I'm determined to let my poor wife sleep, it's only half a dozen stairs. My husky is watching and I can tell she's telling me off for being stupid.

Slowly I get down the stairs, grab the flat of ginger ale and make.my way up the stairs. The first two stairs up and my left ankle is almost screaming audibly, the pain is intense. I breathe deep and tell it to knock it off, and slowly and carefully climb the stairs. By the time I'm at the top I'm out of breath from reminding myself to breath deeply and not let the pain over come me. Nor.ally the stairs don't wind me unless the pain is intense. I grab my liquid gold, and slowly hobble back to bed. My left ankle isn't moving properly so I'm walking like C3P0 from star wars. I heft myself into the bed.

The pain spikes, it's like razors and electricity slicing through my left ankle, it's so bad, that the pain turns cold. I've had frost burn before, and it feels exactly like that. The world is spinning too fast. I'm in so much pain.

All because I didn't want to wake my wife up for ginger ale. She's gonna give me heck in the morning.
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