Just diagnosed with CRPD

[xoa78]

Had 1 MRI and an EGG and 2 appointments with neuro Drs (one was a second opinion which I didn't ask for) and was told at a 9 minute appointments that I 'probably' have CRPS and take pregabilin.... That was it no info, not referral to other services just a take care ! Now I've taken first pregabilin and I'm spaced out !!!! But it would be good to speak to others as I'm sure I'm misdiagnosed x

[Hidden]

Hi u need to get u GP to referral to a pain specialist and who was the person that told u have crps, I have crps had it for five years now u will need more than pregabilin if u do have crps

[xoa78 in reply to Hidden]

Neurology consultant! It was a 2nd opinion and I didn't even get a 1st opinion! He said pregabilin is first line of treatment and never told me anything else. My pain has been getting worse over the past 2 years, constant burning, throbbing and aching.

[Clycat]

Hi,

I thought only a Pain Specialist could give you a definite diagnosis for CRPS. An orthopaedic surgeon told me he was sure I had CRPS but referred me to a pain specialist for diagnosis.

As Yogibe says, you should discuss this with your GP and insist on a referral to a pain clinic. Sadly it seems that not many in the health system understand what CRPS is, including most GPs. If you have not had the pain for very long, I can't emphasis enough how important it is to get a formal diagnosis and start treatment quickly.

If you do get a confirmed diagnosis of CRPS, what the pain specialist can do for you will very much depend on how long you have had the disease. If it is only a few months, you have a very good chance of a full recovery with prompt treatment (sympathectomy, nerve blocks, lidocaine infusions etc). And even if these treatments aren't suitable for you or only give you temporary relief, he/she can help you to control the pain better with drugs and arrange physiotherapy etc.

The "pentin" drugs did not help me, but there are other options if these don't suit you. With all of the pills, they take a few weeks to fully get into your system and work effectively (and take a little getting used to).

Good luck

Jo

[xoa78 in reply to Clycat]

This has been going on for nearly 2 years and the neuro consultant said it was difficult to know what's causing it but he 'thinks' it should be treated as CRPS ! Said I has extensive t investigation 2 neuro appointments, 2 tests and a rheumatology appointment! Second neuro included an appointment I had in 2008 due to being in an abusive relationship and my GP sent me due to the beatings I took to my head... They smirked ! It's so difficult

[Clycat in reply to xoa78]

Hi,

CRPS is difficult, there is not much understanding for it but you must see a pain specialist, a neurologist won't help you. You just have to insist.

I was told for 5 months that I had a nasty injury and just had to be patient as it would take a long time to heal. I knew it was getting worse but no-one listened. In the end I lost my temper with the doctor and her words were - I will refer you but only because you have private insurance, it will be a complete waste of time. It took another month with BUPA until I saw an orthopaedic surgeon who stood watching me struggle from the waiting room to the consulting room said as I walked through the door that he thought he knew what was wrong with me. Instantly he knew because he knew what to look for, I still had to have the tests of course and he referred me on to a pain consultant but that clashed with the summer holidays and it was 10 months from the injury until I started treatment and I think it was just too late for me. The thing that hurts most and I'm not sure I will ever get over is that the second sentence the orthopaedic surgeon said to me was - I wish you had come to see me sooner, we could have helped you with your pain at least.

Jo

[Hidden]

According to the Budapest Criteria you need 3 of the 4 main symptoms for a diagnosis

CRPS Symptoms - Description:

FOUR Main Symptoms/Criteria for a diagnosis of CRPS:

•Chronic burning 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!

[xoa78]

I definitely have the burning pain, at times ultra sensitive too touch ( have to hang my feet over the bed so nothing touches them) body fatigue, insomnia, mood changes, inflammation, depression, irritability and hot skin. Thank you for you response