June 11, 2012 at 10:07 am #221MeghaParticipant
Hi all. My daughter has terrible pains in her lower legs which often awke her up crying at night. A lot of people say it’s just growing pains but I’ve seen other posts about kids with EDS having bad leg pains. Do your children have this issue? If so, what helps? An ayurvedic doc in India said to massage her legs downward and let her soak them in a bucket of warm water, or wrap her legs in warm towels, but that doesn’t always seem to help. He said it was probably due to the fact that she’s very active and hardly sits still, so when she does the muscles contract due to overuse, or something like that. I’m just not convinced that’s the whole issue. Any guidance would be appreciated.
ThanksJune 11, 2012 at 11:19 am #2393
I have various pains in my legs during the night. The treatment is dependant upon the cause really.
Part of mine is circulatory, so I have to sleep with my feet about 6″ lower than my bottom (I have a hospital type bed that I have permanently in a downwards tilt), so that gravity aids the circulation of blood to my feet. You can improvise by raising the head of the bed on blocks, or sleeping with pillows under her bottom.
The second problem is caused by my tissues being too fragile on my lower legs, they don’t withstand pressure very well. So, if I go to sleep (or wake up) with my ankles crossed, I am in pain, my legs also feel very sore at the point of pressure and it takes a while for the discomfort to dissipate. I have to be very mindful NOT to cross my ankles. At one point, even the weight of the covers caused the soreness but, thankfully, this no longer happens.
I have to wear smooth legwarmers 24/7 in order to keep my legs warm, as the cold can trigger pain too. If this is the case for your daughter, what about using an electric underblanket, on very low overnight, to try and maintain a more ambient temperature for her legs.
Pockets of fluid collect in my legs (confirmed once when they suspected a DVT), I’m not 100% sure but I think this is likely to be lactic acid. I have my lower legs massaged with Diprobase cream at least twice a week and this helps improve this condition, I suppose through lymph drainage and helps repair the dry skin there too. Maybe you could massage your childs legs before bed ?
Throughout the day, if I am sitting still for any period of time I repetitively curl up my feet, or lift up my heels, or rotate my feet, or jitter my legs, to help improve the circulation. You may have noticed your child fidgets a lot. It’s ok, we can do this when we are awake but in the night we don’t have this option and I think part of our condition is that our brains forget we have limbs, unless we move them!
I hope some of this helps.
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!June 11, 2012 at 12:17 pm #2395mommy2seanpParticipant
I’m so sorry to hear this. My son is also afflicted with leg pain (ankle, shin, knee). Here’s a short video when he was symptomatic:
My son has multiple allergies. His diet consists of 6-8 foods. This video was taken during an 8 month dairy trial. Upon removal of dairy his symptoms of pain and fatigue progressively improved!
My son was recently diagnosed with MCAS. For him pain can be a “symptom” of a reaction. Specific triggers like dairy, banana, strawberry, latex, and chlorine will cause him pain flares. I’ve found Diphenhydramine (Benadryl) to help alleviate his pain. Continual doses round the clock usually do the trick. I’ve also found that an adult foot bath with warm water and bubbles help as well as cartoons for distraction.
My son is about to start Gastrocom which I’ve been told by his doctor should help with the pain.
Good Luck. I know how hard it is to watch them in pain. Please keep us posted.
TinaJune 11, 2012 at 1:06 pm #2397
Oh he’s such a lovely little darling, I do hope you can get on top of this for him. Is it purely the pain that stops him from standing, or is there circulatory involvement ?
(UK)June 11, 2012 at 1:59 pm #2401mommy2seanpParticipant
Thanks Barbara. It’s hard to know for sure what’s causing what. When my geneticist watched the video he suspected Dysautonomia for the instances when he couldn’t get up from a lying down position. Dysautonomia suspected mast cells were the underlying cause. Other times the pain is just so severe that he can’t bear weight on his legs and is unable to walk. If he attempts he just collapses. Fortunately since removing dairy from his diet the only times he gets pain now is if he comes in contact with a trigger (which can’t always be avoided). The flares usually last a day or two and we manage with benadryl. We’re now working with a mast cell doc who is hopeful that Gastrocom will eliminate even these occasional flare ups.June 11, 2012 at 5:24 pm #2402
I certainly hope that it does.
When my POTS first became truly problematic I had serious leg pains, my legs would go purple and the pain was so bad it made me cry. I had to sit down immediately, or if that didn’t work I had to lie down, in order to reduce the pain. I see your son lies down too but he appeared, in one episode, not to be able to get up. My thigh’s (quadriceps?) became quite weak at one point and it made it difficult to get up.
I hope you don’t mind me saying but I notice that he doesn’t have socks or shoes on a cool surface and I know that my legs hurt much worse when they are cold (and they are cold even in the height of summer, it’s weird!) so I’d like to ask you to put him in some warm socks (with no pattern, ridges or elastic) and shoes or warm slippers, all the time, to see if that helps.
(UK)June 12, 2012 at 5:52 pm #2407MattiesMomParticipant
My daughter often gets the excruciating pain in her legs at night. Dr. Diana speaks about this pain in her video titled “Hypermobility Form of Ehlers Danlos”, may be easier to find on youtube. There is also a member here named Beth who wrote about this type of pain in her EDS kids on her blog (hope she doesn’t mind me posting the link.) Though links don’t work from this forum, so you will have to copy and paste. http://slingsandarrowsofoutrageousfortune.wordpress.com/what-i-wish-i-knew-then/
My daughter had this happen again the night before last. I am getting better at reducing the pain quicker. I give her an over the counter pain reliever and an antihistamine. She is already on a nightly dose of Zyrtec, but I give a her a natural antihistamine called D-Hist when she has this pain and as needed. (D-Hist is made by Orthomolecular and available online, but I get it from our ND’s office.) The D-Hist contains Quecertin, Bromelain, and stinging nettles- all known to naturally reduce histamines.
But this 3rd addition to our leg pain relieving regimen seems to be what helps reduce the pain quickest. I massage Arnicare (Arnica Cream) into her legs where the pain is. We use Boiron brand at get it at our local health food store, but I have seen in at the pharmacy before too. When I massage the Arnica Cream into the painful areas on her legs, the pain subsides in like 10-15 minutes. I still do all 3, the pain reliever, the antihistamine and the cream, but I think the cream has been the best thing we have found to help quickly, so I am sticking to our routine.
Also wanted to tell you that I have POTS and all day pain in my legs. It is a disabling pain. But it is different than the night time only pains that I had as a child. I would wake my mom up in the evenings with this excruciating pain, and the doctors called it growing pains too. Strange thing was, that I was the only one of all my siblings who experienced this awful night time pain.
I can almost predict when it will happen to my daughter. For example, if she tries to walk too far, or keep up with running kids… I will usually say to my husband “I bet her legs will be killing her tonight.” She usually wakes up with this pain or has it right at bedtime. We have only known about the Ehlers-Danlos since March, so before that, her doctor would call it growing pains too, but we always knew there was more to it.
Best wishesJune 12, 2012 at 11:03 pm #2409PalominoMorganParticipant
I had horrendous leg cramps from 12-24. Getting them again now in my left calf. I soak a lot in epsom salts. Magnesium can help. Careful stretching and massage also helped. I also liked BenGay growing up. If you have Dr. Francomano ask her for the specialty formulated cream. It has baclofen in it that helps relax muscles.June 13, 2012 at 5:53 pm #2417
Thanks for telling me about the Arnica Cream, I’ll give that a go. . . . . . and, yes I remember buying some epsom salts but I haven’t given them a go yet, now where did I put them . . . . .
BarbaraJune 14, 2012 at 1:03 am #2424SweetFeatherParticipant
The things I tried which seemed to help my boys’ leg cramps:
Almonds, Natural Calm (magnesium)
Carlson’s lemon flavor cod liver oil (This helped my son who was allergic to dairy and soy who drank rice milk. I think he was low in Vit D. It also dramatically improved his acne.)June 14, 2012 at 1:12 pm #2425MeghaParticipant
Thanks for all the replies. I gave her Motrin and massaged her legs with a lavender arnica massage oil then put warm rags on them. It took quite a while but she finally stopped writhing and fell asleep. Fortunately it didn’t happen last night. I stocked up on arnica cream and a natural antihistamine as well as an apple cider vinegar based tonic that’s supposed to cure leg cramps. Has anyone tried that?June 14, 2012 at 6:11 pm #2427
No but hey, I’m learning all sorts of stuff here, thanks guys!October 16, 2012 at 2:09 am #3058coreendarriParticipantOctober 17, 2012 at 5:46 pm #3062AnneParticipant
I wanted to comment on the idea of massage downward on the legs. I’m a massage therapist and it’s better to massage upwards to protect the valves in the legs. Here is brief description that I hope is helpful.
“Blood flow in the veins below the heart is helped back up to the heart by the muscle pump. The walls of the veins are thin and somewhat floppy. To compensate for this many veins are located in the muscles. Movement of the leg squeezes the veins, which pushes the blood toward the heart. When the muscles contract the blood within the veins is squeezed up the vein and the valves open. When the muscle is at rest, the valves close helping to prevent the backward flow of blood. This is referred to as the muscle pump.” This description is from a support hose company but it works 🙂
- You must be logged in to reply to this topic.