Frustrated by lack of diagnosis

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 -

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

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 -

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.

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.

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 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 -

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.

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.

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.

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 -

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