Suggestions From Families with SED, SMD and Kniest and people with Dwarfism
Due to unusually formed joints and bones and collagen problems, people with Kniest, SED, and SMD often have joint or back pain. The following is a summary of what some people with SED and SMDs do to manage pain. There are also medical procedures and medications which can help. Life is too short for unnecessary pain. Please contact us with questions or comments.
- Know what your limits are.
- Wear solid shoes that fit your feet well and give a lot of support.
- Get a good night’s sleep every night. This is one of the most important things you can do.
- Keep moving about every 20 minutes (toilet, drinking water, pencil sharpening), do not sit long times at once on a chair. Long lectures can be really painful!
- Buy yourself a present! Do something nice, exiting, surprising.
- Sleep is important! Make sure you have a bed that fits well and good pillows. Consider neck rolls or even rolled up towels for popper head support and neck position.
- Avoid walking long distances or carrying heavy objects. Consider using strollers for carrying young children in the house. Use other ways to carry goods without straining your back.
- Get regular light exercise that has been designed for you by a physical therapist. See exercise and alternative therapies for a list of exercises to consider with your medical provider.
- Keep fit! Extra weight is harder on the joints.
- If prescribed by your M.D, remember to take pain medication. Pain is not something you have to tough out and suffer through.
- Keep a diary or notes of when you are in pain. Look for patterns. Take care of yourself as well as possible to minimize pain.
Helpful For Pain Relief
- Foot roller for your desk (both work and home). Try rolling tennis balls under your feet.
- Use a small heater under your desk (both work and home).
- Avoid reaching up high. Use a reacher. They make all shelves at the supermarkets accessible and you never have to stoop to reach something that is on the floor. See ACE reachers: http://www.arcmate.com/.
- See http://www.painreliever.com/lowbackpain.html for some options in car seats designed to ease low back pain and other pain relieving tools such as hot/cold packs.
- Hot baths and hot tubs can ease pain. Some people enjoy hot baths with Epsom salts.
- Chiropractic (consult medical provider before trying a chiropractor. Make sure the Chiropractor uses an adjustment device on its lower setting.
- Electric muscle stimulator. This is something you can get from a chiropractor. It is two-four electrical pads that stimulate the muscles. Good for tired feet after walking a lot or muscle spasms in the back
- Make your own hot pack (tip from parents in the Kniest/SED group):
Make your own hot pack: I took one of her big brother’s old wool socks (which is bigger than her foot size), and then I took an old pair of her tights (girl’s nylons) and cut the leg off.
I put the nylon “sock” inside the wool sock. Then I made four lines of stiching, from the top of the socks, down to the toe, making the lines meet in a point. One line is in the front, one in the back, and the other two are on the sides.
These lines are sewing the socks together, leaving four “chambers” between
the two layers of socks. Then, I filled the chambers with flax seeds and sewed the tops of the chambers together to seal the flax seeds inside
Whenever her ankles are hurting, I heat the “socks” up in the microwave, and then put them on her feet. These days, she goes to bed with them on quite often. Just be careful that the insides are not too hot- the microwave heats things from the inside out, so the outside sometimes only feels
lukewarm but the inside is quite hot.
Helping Children who are in Pain
- The book “Relieve Your Child’s Chronic Pain : A Doctor’s Program for Easing Headaches, Abdominal Pain, Fibromyalgia, Juvenile Rheumatoid Arthritis, and More” (Lynn Sonberg Books) by Elliot J., M.D. Krane, Deborah Mitchell has information about pain medications.
- Remember that children with SED and SMD and Kniest may be more tired at the end of the day than unaffected children.
- Encourage your child to take a hot bath every night.
- When a child comes home and starts to hurt, have him/her lay on the couch and put a heating pad joints that hurt.
- Using a heating pad for 15-30 minutes in bed on joints that hurt before you go to sleep. This may help reduce pain. It is best to use a heating pad that goes off automatically after one hour for safety.
- Buy one of those small stuffed “pillows” that you put in the microwave to heat up. It can also be placed on the hip. This is also safer for night-time use.
- Teach your child to learn his or her own limits.
- See a Physical Therapist or an Occupational Therapist. Health Plans will often pay for these important services. Please see the advocacy page or email us if you need help getting these services.
- Relieve Your Child’s Chronic Pain : A Doctor’s Program for Easing Headaches, Abdominal Pain, Fibromyalgia, Juvenile Rheumatoid Arthritis, and More (Lynn Sonberg Books) by Elliot J., M.D. Krane, Deborah Mitchell. How to recognize and manage pain. This book also has information about pain medications.
- It is difficult to watch see anyone in pain, especially your children. Contact us if you need support.
Where to go for More Information
- http://www.coventrypainclinic.org.uk/. This site help people “improve their pain management and coping abilities, and to reduce anxiety through knowledge and understanding.”
- http://www.painfoundation.org/ serves, advocates for, and mobilizes people with chronic pain. “Founded in 1997, the American Pain Foundation is an independent nonprofit 501(c)3 organization serving people with pain through information, advocacy, and support. Our mission is to improve the quality of life of people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management. “
- http://www.tenresolutions.org/: resolutions for overcoming pain, tips for family members of those in pain, articles, information about pain medication and side effects, solutions, and chat and discussion forums. Site by Brian Grady, Ph.D.
- International Association for the Study of Pain®(IASP®) Founded in 1973, IASP is a non-profit professional organization dedicated to furthering research on pain and improving the care of patients with pain: http://www.iasp-pain.org/
Do you have ideas for things to try that are not on this list? Please contact us: email@example.com.