Recently diagnosed with CRPS

[Paulac90]

Hello everyone I rolled my left ankle in October 2015, and was than diagnosed with CRPS, I don't have much pain to the touch, however I do have extreme coldness to my left ankle (my right ankle could be 85-90 degrees and my left doesn't register on the thermometer) I have what they call mottling, and also lack range of motion, I have been recently been able to work only 4 hours a day and some days, by the end of those four hours my left foot burns and stings like crazy, and can't wait to get my shoe and sock off, I have had 4 sympathic nerve blocks, therapy, I take amitriptyline 50mg, gabapatine 600 mg, and 1000 mg of Tynelol, currently the blocks are being denied but hopefully will start them soon as I was getting 4 days pain free but still had my range of motion problem, and so far it is only in my left foot and like 6 inches above my ankle is where the color changes start, I have had blue, grey, purple, and spotty looking, well currently I feel like I have a pebble under my heel ??? Does anyone know why or what this means?? I keep a positive attitude and keep trying to force my ankle to bend, because I hope to prevent my ankle from curling up into very painful looking positions can you all relate to early onset of CRPS ????

[Waulahn5]

Everytime I come on this forum I read and learn something new I'm sorry I can't help with this but I only answered because I feel so bad about what u are going through. This sounds awful. I suffer from ankle pain and swelling there and yesterday my lupus doc said he was going to send me for a scan. But what you are describing no where near I'm in pain. Good luck and best wishes for future.

[dianadoors]

When I was diagnosed with CRPS I was told to keep using my hands as much as possible.I did and now I think the general consensus is that my condition has plateaued and I no longer suffer with full blown CRPS.My hand was burning hot,never cold.I do sympathise with you it is a bizarre unforgiving condition.BUT,you are doing everything you can do.Being positive and keeping it in position and exercise is the BEST that you can do!Well done to you!

[johnsmith]

CRPS is easy to diagnose.  Doing something about it is a different matter.  You are up against all sorts of neurological theories as to why you have it.  Muscle function causes for it are likely never to be mentioned.

I do not have CRPS, but I have at first hand how painful shortened muscle is and how difficult it is to return functioning to normal (if that is possible).  I broke a bone in my wrist several years ago.  The loss of strength in my fingers was eye opening and this was after the break had healed.  My McTimony chiropractor got the strength back in my fingers by massaging the small muscles that lay over tendon sheaths.  The increase in strength was spectacular.  The other effects of that wrist break is that my right hand has a habit of locking solid and I have to work at unlocking this.  The pain I have experienced in muscles as a result of the wrist break has been excutiating.

I have given you my experience which shows I have some experience which may or may not relate to yours.

Muscles are designed to contract and they can over contract on occasion.  When they over contract they can be become locked in that over contracted mode.  There is no mechanism in the muscle that can enable that muscle to uncontract.  The human body engineering system is not designed for this to take place.  You can access my previous posts if you want technical details regarding muscle functioning.

You need to see a sports massage therapist.  They may not cure what you have, because it will take some time to get the muscle back to its previous uncontracted state.  Your muscles need stretching.  It is a painful process.  You will need to engage in yoga so as to begin to learn about how muscles in their lengthened state will give you better poise.  You will need to see an Alexander teacher to help with posture problems.  You will need to see a McTimony chiropractor to help with removing micro cramps.  No one discipline by itself will help.  You will need to engage a multitude of different therapists as mentioned above.

What I have suggested may or may not help provide a cure.  There is no instant cure.  MY experience was that it took several months of work to deal with my muscle problem and I am someone with experience.

Hope this helps.

[Hidden]

CRPS is not easy to diagnose there are many UK sufferers for whom it was 0 - 20 years before they were correctly diagnosed and I know of 2 for whom it was 26 ad 27 years before they were diagnosed with CRPS because 95% of the medical profession have never heard of it.

According to the Budapest Criteria you must have  3 of the 4 main symptoms and will have some of the secondary.

CRPS Symptoms - Description:

FOUR Main Symptoms/Criteria for a diagnosis of CRPS:

•Chronic burning or freezing pain - includes allodynia; extreme sensitivity to touch, sound, vibration, wind, and temperature.

•Inflammation - this can affect the appearance of the skin; bruising, mottling, shiny appearance, blotchy or pale appearance, and tiny red dots are some examples.

•Spasms - in blood vessels and muscles of the extremities, called vasoconstriction,

•Insomnia/Emotional Disturbance - (including limbic system changes such as short-term memory problems, concentration difficulties, and irritability).

Not all four symptoms are required for a diagnosis but most patients do have at least three out of the four at any one time. There are a great many additional symptoms that can occur but not all patients will have all symptoms. Some of the symptoms may even be transient depending on the Stage the patient is in; the time of day, weather, noise level, current medications, whether or not the patient was treated with ice or hot/cold contrast therapy, etc. What makes this disease even more difficult for Doctors to diagnose and treat is that patients can present with different symptoms at different times, even from one appointment to the next.

1) The CONSTANT PAIN can be described as a burning pain. It feels as if a red hot poker were inserted into the affected area. it is also described as throbbing, aching stabbing, sharp, tingling, and/or crushing in the effected area; this is not always the site of the trauma. The effected area is usually hot or cold to the touch. The pain will be more severe than anticipated for the type of injury sustained. This is a hallmark of the disease. Allodynia is typically present as well. Allodynia is an extreme sensitivity to touch, sound, vibration, barometric pressure changes, loud noises, wind/breeze, temperature, clothing, and even the gentle touch of a loved one. This makes it increasingly difficult on the spouses, children, and other family members; as their softest touch can now cause pain instead of comfort. If the patient has not been properly diagnosed yet and these sensations not properly explained, these symptoms can cause extreme duress and confusion to all involved.

2) The INFLAMMATION is not always present in the same form but it can take various forms; the skin may appear mottled, become easily bruised, bleeding in the skin, small red dots, have a shiny, dry, red, and "tight" look to it. In addition; increase in sweating usually occurs as well as swelling in and around the joints (shoulders, knees, wrists). In some patients a lack of sweating may occur, and some even go back and forth between the two.

3) The SPASMS result in a feeling of coldness in the effected extremity as well as body fatigue, skin rashes, low-grade fever, swelling (edema), sores, dystonia, and tremors. The spasms can be confined to one area or be rolling in nature; moving up and down the leg, arm, or back. They can involve not only muscles but also blood vessels.

4) The fourth part of this square is INSOMNIA and EMOTIONAL DISTURBANCE. CRPS affects the limbic system of the brain. Doctor Hooshang Hooshmand described it well: "The fact that the sympathetic sensory nerve fibers carrying the sympathetic pain and impulse up to the brain terminate in the part of the brain called "limbic system". This limbic (marginal) system which is positioned between the old brain (brainstem) and the new brain (cerebral hemispheres) is mainly located over the temporal and frontal lobes of the brain." This causes many problems that might not initially be linked to a disease like CRPS; chief among them are depression, insomnia and short-term memory problems but also includes agitation, irritability, and possibly even poor judgement.

CRPS can cause Depression, NOT the other way around.

CRPS causes insomnia by not allowing the body to drift into REM, or rapid eye movement, sleep. This is the sleep that allows the body to use its own healing abilities. Without it, the patient's pain cycle continues and becomes more entrenched. As the body cannot heal itself, it becomes harder to achieve that sleep, which makes the pain worse and so the cycle continues. Many patients can feel they are losing their mind as their ability to remember things, short-term, greatly decreases. Things like: what someone told you an hour ago, what you had for lunch yesterday, whether you took your pills this morning, what you were just talking about, etc., are quickly forgotten. You are NOT losing your mind. Loss of short-term memory is part and parcel of CRPS. Other signs of problems here would include the inability to think of, um, well, ah, hmm, just the right word. The patient's ability to concentrate is also lessened while their level of irritability is increased. These problems get even worse as the sleep cycle continues to worsen, weeks and months on end building a sleep deficit you cannot seem to recover from.

Do these symptoms sound familiar to you? Do you also sometimes have an increase in your pain when your stress level is higher? Or the noise level is higher? Do you want to crawl into a hole by yourself and pull it in after you? Does the simple rustling of a newspaper or the soft touch of your spouse send you through the ceiling in pain? Do you sometimes have trouble finding a certain word? Do you sometimes completely lose track of what you are saying? If these symptoms sound familiar, know this; you are NOT crazy and you are NOT losing your mind. You are also not alone, not anymore.

ADDITIONAL SYMPTOMS

There are many additional symptoms that can be part of CRPS besides the four main ones. These include but are not limited to;

- changes in skin temperature (warmer or cooler compared to the healthy/opposite limb).

- changes in skin color (skin may appear red, dusky, covered with red dots, cyanotic, blotchy, or pale).

- hypersensitivity to touch, sound, vibration, wind, noise, temperature, barometric pressure changes, water temperature, etc.

- irritability.

- depression, fatigue, and/or insomnia.

- changes in hair/nail growth (nails can become brittle, cracked, or grooved - increased/decreased hair/nail growth).

- skin can become shiny, changes in sweating patterns - increase/decreases.

- bone and muscle loss/changes, atrophy/weakness.

- swelling and stiffness in effected joints.

- throbbing, crushing, tingling, shooting, aching, stabbing, burning pain in the effected area.

- tremors (shakes).

- problems moving the effected extremity/body part.

- migraines/cluster headaches.

These symptoms can come and go and alternate over time, changing from month to month and year to year depending what stage the patient is in, what treatment they are on, what medications they are using, how successful these treatments are, how the disease is progressing, and/or what other disease(s) might be introduced along the way. One of the many problems for Doctors in treating this disease is that many patients present differently and the symptoms can vary not only with the stage the patient is in but even the time of day the patient sees the Doctor!

[Hidden in reply to Hidden]

10 - 20 years

[g3b1gk7 in reply to Hidden]

Thank you for explaining so much I was diagnosed a week ago and been trying to find out as much as possible about crps & your's is the 1st one I have read that explains the issue with more then the 4 main symptoms.

[Hidden]

Under no circumstances must you let them use Ice or Hot and cold water contrast therapy both of these will lead to permanent blood vessel damage. In 2 cases I know of it lead to gangrene and amputation. Neither must you allow aggressive Physio this will make you extremely hypersensitive and make you more susceptible to spreads.

I was given 2 and 3 specialist said I am the most hypersensitive he has seen in 20 years, had 5 spreads and blood vessels in hand are so damaged that heart cannot force blood through at a rate that will beat gravity