If you or a loved one was diagnosed with RSD/CRPS (they are one in the same), also known as Reflex Sympethetic Dystrophy or Chronic Regional Pain Syndrome, then you are faced with many new challeges. In this guide I will offer some helpful tips and advice on how to live with this disease and cope with it in the years to come. This guide is not the substitute for medical treatment. Please seek or continue treatment with a knowledgeable doctor.

If you wish to gain more knowledge on this condition, I have an informative guide that you can read and learn from that can be found by clicking this link:  RSD/CRPS.... A Guide for Chronic Pain Sufferers.

This guide is to offer some tips on how to better manage this disease. These may be things you weren't aware of or maybe your doctor hasn't told you about.

1. You are not crazy and the pain you are experiencing is NOT IN YOUR head! This condition is the MOST PAINFUL form of chronic pain and is the most painful disease or condition you can have.

2. There are foods containing a poison called solanine (solanine is a natural poison most often found in tobacco and is a natural carcinogen that causes pain in muscles). This poison can make your pain worse and aggrevate your symptoms! The following foods contain this natural poison and if at all possible RSD/CRPS sufferers should avoid the following foods at all cost:

• Wheat and any foods containing gluten. This includes: oats, barely malt, modified food starches, etc. Substitues for these products are corn and rice pasta, rice, sprouted grain bread and other wheat-free breads such as spelt and millet.
• Foods that are in the night shade family which include: tomato, white potato, eggplant, peppers, and red skin potato's.
• Sugar substitutes: aspartame, saccharine
• Avoid food preservatives and additives.
• Animal Protein: red meats, and poultry & eggs containing antibiotics.
• Tobacco and Caffeine products

Read food lables so you are aware of what you are consuming. If you see anything that lists solanine please avoid consumption of that food. The following foods are encouraged (unless you are allergic):

• Eggs (make sure they don't contain antibiotics!). If possible get organic.
• Poultry (chicken, turkey, cornish hens, duck, goose and game birds)
• Fish and shellfish
• Whole grains (kamut, millet, brown rice, wild rice, spelt, teff)
• Nuts (almonds, brazil nut, filbert, macadamia nuts, pecans, pine nuts)
• Distilled Water (drink a gallon per day)

3. RSD/CRPS sufferers should take the following supplements to keep their bodies is as prime condition as possible. Please check with your doctor or advise your doctor if you take or will be taking the following recommended supplements. Only your doctor will know if any of the following supplements can counteract with any prescription meds you are taking.

• ESSENTIAL SUPPLEMENTS: A 5000 IU (protects your cells); B Complex- high potency & time released (helps restore healthy nerve functions); Vitamin C- 2,000-5,000mg daily (it's an antioxidant that reduces inflammation and pain); Calcium 2,000mg (aids in keeping your bones strong and aids in neuromuscular activity); D 400 IU (relieves muscle spasms and pain); E 400-600 IU (antioxidant which helps maintain healthy nerve function); Glucosamine- 1.5g daily (helps with your joint health); Chrondroitin- 1.2g daily (important for creating cartiliage in joints); Magnesium- 750 to 1000mg daily (helps prevent depressions, dizziness, muscle twitching and weakness); Lecithin- 2400mg daily (helps your nervous system and is involved with your neurotransmitters);
• HERBAL SUPPLEMENTS: Primrose Oil (is an essential fatty acid and acts as an anti-inflammatory); Acidophilus (maintains a healthy digestive tract); Spirulina (contains nutrients that cleanse and heal your body); Coenzyme Q10- 100 to 200mg daily (improves with tissue oxygenation); Melatonin- sustained release formula (promotes sound sleep. Take 1-2 hours before bed)
• The following topical remedies can be used to help relieve pain:  Rosemary oil and Lavendar oil diluted with water or witch hazel- rub into skin where your pain is. Zoltran (caspian cream)- rub into affected area with a cotton ball. This cream is hard to get but it contains a substance that is said to block pain receptors.

4. Light to moderate exercise is CRUCIAL for RSD/CRPS sufferers! In addition to physical therapy or hydrotherapy, make sure to do light to moderate exercices with affected areas 3 times a week. Be careful not to "over do" it as you can potentially aggrevate your pain. Stretching is a well tolerated form of exercise. Walking is also good exercise. If your doctor recommends you doing physical therapy it's important to find a physical therapist who knows how to work with RSD/CRPS patients because if they aren't familiar with this condition they can potentially make your condition worse. Also, if you do go the physical therapy, NEVER allow anyone to apply ice or cold compresses to your RSD/CRPS area(s) as ICE CAN MAKE your RSD/CRPS worse and/or spread!

5. RSD/CRPS patients very commonly develop depression as a result of having this condition. If you feel or think you have depression seek your doctor's advice as soon as possible, as there are many different anti-depressants they can prescribe which will help. If you feel suicidal or have suicidal thoughts than CALL 9-1-1 IMMEDIATELY!!!

6. Raynaud's Disease is a frequent occurance with people who have RSD/CRPS. Most of the time patients will develop Raynaud's Disease AFTER being diagnosed with RSD/CRPS. Raynaud's Disease is a disorder affecting the hand and feet. It makes the affected limbs hypersensative to cold temperatures and vibrations or tapping. When this happens, the small arteries in your hand and/or feet will contract and spasm. As a result the fingers or toes of the affected area will be deprived of oxygenated blood which then causes severe numbness.

7. Try distracting yourself from pain by doing things you like such as: watching television, reading a book, playing video games (I purchased a Nintendo DS which has been a godsend for me! Nintendo DS is small, portable, and relatively in-expensive. There are thousands of games and many are catered for adult players like Crosswords, Mahjonh, Sudoku, Mysteries, etc. I like the Left Brain Right Brain game and the Big Brain Academy which help restor your memory function), writing, or going online. Even if you are in pain, it helps to keep your mind off of it by doing things you enjoy. I know it's hard sometimes but if you push yourself then you may see it helps!

8. Many times RSD/CRPS sufferers can actually get worsened pain symptoms by vibrations from a moving car, motorized scooters, music (yes, music!), a running computer, an elevator, etc. I mention this because I am super-sensative to these things and most of the time these things make my pain levels skyrocket! Weird, but true! It was hell for me when I was first diagnosed with RSD/CRPS because my ex-husband (we were still married at that time) played in a band and they had rehearsals in a sound-proof studio in my basement. Even though it was sound-proof, I could FEEL every little vibration when they played, in particular my husband's bass. It was #ell for me and caused my pain levels to become torturous. It's important for our friends and family to understand this and learn to help us cope with things that can trigger the worsening of our pain... like music.

9. Educate friends and family on RSD/CRPS as much as you possibly can: the more they know the better off a support system you will have. Refer them to your favorite websites that talk about this condition, buy them a book and have them read it, take them to your doctors appointments and have your doctor explain it to them. I cannot stress this enough because it's important to have people UNDERSTAND what you suffer from and help you to deal with it. MANY RSD/CRPS sufferers find that this condition ruins relationships with their friends and family. It makes them unable to work. It affects their mobility. Their emotional and mental psyche. It's unfortunate but many times people with this condition lose their friends, jobs, aquantainces, and marriages. If you find yourself to be alone or you have very little support (like I do) it's important to talk with others who have this condition to express your feelings or to vent. Online message boards work wonders and connect you to others like yourself who are dealing with the same problems you are dealing with. Do a search on GOOGLE for "CRPS Message Boards" or you can visit my new message board at www(dot)CRPSSupport(dot)org. I am there if you want to post and talk. Also, if you need to go see a therapist. Don't be afraid to use resources like this to help you.... that's what they are there for, so use them.

10. RSD/CRPS patients often complain of pain being worsened by little things like: a gentle breeze blowing across their affected body part(s), clothing that just barely touches the affected area(s), blankets and sheets on their bed touching the affected body part(s), water from a shower hitting the area(s), etc. This sensitivity is called Allodynia and oftentimes patients will need to go through "desensitation" on the affected areas to help. Also, it is very common for people who have RSD/CRPS to stop shaving the affected area(s) because when they shave it feels like (to them) something peeling the skin away... the pain is so bad it's almost indescribable.

11. RSD/CRPS patients commonly experience skin and nail changes as the disease progresses. Some sufferers can have skin that is mottled, bright red, blue-ish purple, or white. The skin can be shiny and tight or excessively dry. It can be cold to the touch (yet feel like it's on fire on the inside) and yet be sweaty. You may notice that the hair on your affected area(s) may grow more rapidly than normal or stop growing all together. Sometimes the hair thins out or becomes very thick. There can be unexplained swelling of the affected area(s).  The nails on the affected area(s) can become brittle, cracked, and grow overly fast. Toe or fingernails can be discolored. As an example, my toe nails are a very dark purple (almost black) in color.

12. Listen to your body and don't over do it.... if you can't get that last load (or even one load) of laundry done then don't do it. Don't feel guilty, or allow others to make you feel guilty, when you are unable to do something! Do what you can when you can. 

13. When you are able to do things, make small "to do" lists. You can list everything and anything that may need to be done but list the items in order of importance. When you have accomplished a task, cross it off your list and be proud of your accomplishment. If you need help with something DON'T be afraid to ask someone for help! If you do not have anyone that can help you then check out your community resources and see about in home care. Most insurances will cover the cost of in-home health care and most of the time these agencies will send people that can help give you your meds, bathe you, clean and cook meals.

14. If you are unable to work because of RSD/CRPS then seek assistance. There are many programs designed to help people with this disease and the disabilities it entails.  RSD/CRPS IS A covered condition that qualifies you for disability benefits. This is a long process but it is a covered condition. You might even be denied the first time but fight for your rights to the benefits you EARNED!  Don't be too proud to seek out food stamps and medical coverage from your state Human Services department. Getting Medicaid to help with your prescription costs and doctors visits alone can be a huge financial relief. I know I was spending over $200.00 per month for my presriptions and supplements. It was killing me financially especially since I cannot work. I applied for Medicaid and get health insurance which saves me a ton of precious money! Don't let your pride get in the way of getting the benefits you are entiltled to!

15. Was your diagnosis of RSD/CRPS a direct result of an injury or negligence at the hands of someone else? You may have a right to be compensated. Contact an attorney who is experienced with RSD/CRPS cases and ask them what rights you are entitled to. I can recommend one of the nations BEST RSD/CRPS lawyers. His name is Steven Goren (with Goren, Goren and Harris) and his number is 1-800-6700-LAW or you can visit their website at www(dot)gorenlaw(dot)com.

16. Most importantly: Establish and MAINTAIN a good relationship with your doctors. If you aren't comfortable with the doctor you have seen then find a new doctor who you are comfortable with and make sure you establish a good relationship by being open and honest with that person. Don't be afraid to tell him or her anything because if you are scared to tell them certain things that can definately have a negative impact on your overall treatment. If you smoke, be honest. If you consume alcohol, be honest. They are there to help- not judge- and by keeping important (or even seemingly unrelated information) from your doctor you can potentially make things worse. 

Thank you for taking the time to read this guide. I hope it was helpful to you and if so, please vote YES below. Your vote of YES is important to me as it ranks my guide by the number of votes it receives. If you have any tips you would like me to add to this guide please contact me and let me know and I will gladly add it.

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Have a wonderful and blessed day!

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