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Erythromelalgia help
My 6 year old daughter has just been told she has Erythomelalgia, her problems started 4 years ago and no dr knew what was wrong, she only gets it in her genital area, burning, swelling, severe pain, itchiness and complains of feeling really hot. She was on Tofranil for 6 months which didnt help, then we tried prozac for pain which again didnt help she has just started Gabapentin and im hoping it works, Im in Australia and have never heard of this before and her dr's dont know much about it either. Any help would be greatly appreciated.
Hello, Jac78,
I have Erythromelalgia. Though I do not know much, at al, of the form of EM that your daughter is exhibiting, you may find at least some answers in the Ben's Friends online group "Living with Erythromelalgia" You may find it very informative. Hopefully, should you decide to check it out, it will prove a source of comfort as well as support. The combined knowledge of members who have committed much of their lives to researching EM, to help themselves and others, is quite extensive.
Good luck,
Cheshyre Catt
I have Erythromelalgia. Though I do not know much, at al, of the form of EM that your daughter is exhibiting, you may find at least some answers in the Ben's Friends online group "Living with Erythromelalgia" You may find it very informative. Hopefully, should you decide to check it out, it will prove a source of comfort as well as support. The combined knowledge of members who have committed much of their lives to researching EM, to help themselves and others, is quite extensive.
Good luck,
Cheshyre Catt
The link already posted is a good group for EM. Another is the EM group on Yahoo. I participate in both. The Erythromelalgia Association website, if you join, has articles and newsletters that include research that could be helpful to print for your daughter's doctor. The newsletter has some success stories regarding treatment that has helped others. Their member survey (2008) would probably also be helpful to her doctor and you as it lists various treatments tried and results, as well as other disorders that members have (some could cause Secondary EM). Many with EM are sensitive to certain meds, chemicals and foods and it varies person to person. You'll have to experiment to figure out her triggers. Consider ALL foods, not just alcohol and spicy food. Here is a link to more good info below.
http://www.ncbi.nlm.nih.gov/books/NBK1163/ Gene Reviews
I've had Erythromelalgia for many years and just recently learned that I have Mast Cell Activation Syndrome related to my having a Heritable Disorder of Connective Tissue. The MCAS either causes, or triggers, my EM, so my treatment has changed and is more effective now. If neither parent has EM, it would be helpful to find out what her underlying disorder is that causes the EM, because treating that disorder may help the painful EM also. An eval by a good Dysautonomia specialist (cardiologist or neurologist usually) may help, and an eval and bloodwork by a rheumatologist. You may also want to have her see a geneticist. A great dermatologist is sometimes a big help also. These are just things to consider.
Good luck to you in your search. I hope you can find something to help your little girl. It's terrible for such a young child to have to deal with such pain.
http://www.ncbi.nlm.nih.gov/books/NBK1163/ Gene Reviews
I've had Erythromelalgia for many years and just recently learned that I have Mast Cell Activation Syndrome related to my having a Heritable Disorder of Connective Tissue. The MCAS either causes, or triggers, my EM, so my treatment has changed and is more effective now. If neither parent has EM, it would be helpful to find out what her underlying disorder is that causes the EM, because treating that disorder may help the painful EM also. An eval by a good Dysautonomia specialist (cardiologist or neurologist usually) may help, and an eval and bloodwork by a rheumatologist. You may also want to have her see a geneticist. A great dermatologist is sometimes a big help also. These are just things to consider.
Good luck to you in your search. I hope you can find something to help your little girl. It's terrible for such a young child to have to deal with such pain.
Hey Jac78.
Welcome to the forum.
I'm so sorry your daughter is going through this.
It must be also very difficult for you.
The need to see her suffer less and to get proper treatment is imminent,
however, doctors and parents alike, should refrain from attempting
ANYTHING, in the hopes of some relief.
I understand it is a difficult condition to diagnose and treat, nonetheless,
before continuing on this difficult and unknown course of exploring prescription medications-due to no standard treatment being available), I think that having your daughter treated holistically,is the right thing to do.
At present only her symptoms are being addressed, overlooking possibly serious imbalances, that led to this condition.
Whether it's inherited Erythromelalgia in connection to the F1449v mutation( or other ion channel mutation ),or precipitated by other diseases
such as, Small fiber peripheral neuropathy, metabolic disorder, Polycythemia or other, it is imperative to consider a safer holistic approach as sensitivity to most prescribed medications may be elevated
and perhaps exasperating her symptoms.
Erythromelalgia in the genital area is a rare variant of this already rare disease. There are no clinical studies available and there's suspicion some of the drugs offered for pain relief, are in some Erythromelalgia cases, contra-indicated.
It is my opinion that due to the lack of enough medical research,and with no known medical treatments, at present it is futile to pursue this matter exclusively through conventional medicine,.
Areas to investigate are:
1. Changes and events that took place before the onset of her symptoms.
( Genetic pre-dispositons need activators or enabling factors, before they can be activated and expressed.)
2. BPA, fluoride, chlorine, aluminum,heavy metals, millk, sugar, simple carbs, gluten and any chemical or food ingredient that may have a connection to her condition.
A rotating elimination type of diet/avoidance test over a few weeks may
be helpful to rule out any offending substances.
3. Try Dr. Coca's Pulse Test; it's a free download. It indicates within a week any sensitivities or reactions to substances ingested (food and drink).
4. Look into Energy Medicine modalities. NAET, "Allergy Antidotes",
EFT, TAT, etc.
5. Search for holistic practitioners and holistic doctors close to you.
I wish the very best for your daughter.
Stay strong for her and focus on her improvement
and wellness, rather than her condition.
I realize this is hard to do, but making a conscious effort
on a consistent basis, putting your intention and attention toward her
improvement, will gradually help make a positive shift.
Blessings!
Niko
Welcome to the forum.
I'm so sorry your daughter is going through this.
It must be also very difficult for you.
The need to see her suffer less and to get proper treatment is imminent,
however, doctors and parents alike, should refrain from attempting
ANYTHING, in the hopes of some relief.
I understand it is a difficult condition to diagnose and treat, nonetheless,
before continuing on this difficult and unknown course of exploring prescription medications-due to no standard treatment being available), I think that having your daughter treated holistically,is the right thing to do.
At present only her symptoms are being addressed, overlooking possibly serious imbalances, that led to this condition.
Whether it's inherited Erythromelalgia in connection to the F1449v mutation( or other ion channel mutation ),or precipitated by other diseases
such as, Small fiber peripheral neuropathy, metabolic disorder, Polycythemia or other, it is imperative to consider a safer holistic approach as sensitivity to most prescribed medications may be elevated
and perhaps exasperating her symptoms.
Erythromelalgia in the genital area is a rare variant of this already rare disease. There are no clinical studies available and there's suspicion some of the drugs offered for pain relief, are in some Erythromelalgia cases, contra-indicated.
It is my opinion that due to the lack of enough medical research,and with no known medical treatments, at present it is futile to pursue this matter exclusively through conventional medicine,.
Areas to investigate are:
1. Changes and events that took place before the onset of her symptoms.
( Genetic pre-dispositons need activators or enabling factors, before they can be activated and expressed.)
2. BPA, fluoride, chlorine, aluminum,heavy metals, millk, sugar, simple carbs, gluten and any chemical or food ingredient that may have a connection to her condition.
A rotating elimination type of diet/avoidance test over a few weeks may
be helpful to rule out any offending substances.
3. Try Dr. Coca's Pulse Test; it's a free download. It indicates within a week any sensitivities or reactions to substances ingested (food and drink).
4. Look into Energy Medicine modalities. NAET, "Allergy Antidotes",
EFT, TAT, etc.
5. Search for holistic practitioners and holistic doctors close to you.
I wish the very best for your daughter.
Stay strong for her and focus on her improvement
and wellness, rather than her condition.
I realize this is hard to do, but making a conscious effort
on a consistent basis, putting your intention and attention toward her
improvement, will gradually help make a positive shift.
Blessings!
Niko
Visit this forum - great people and lots of helpful info:
http://www.livingwitherythromelalgia.org/
http://www.livingwitherythromelalgia.org/
the only other mention i found on the entire MedHelp site occurs over on the autoimmune disorders page. You might try asking your question there or on the neurology expert page.
http://www.medhelp.org/forums/Autoimmune-Disorders-/show/174
http://www.medhelp.org/forums/Autoimmune-Disorders-/show/174
I am so sorry to read that your child has these problems. You may not realize you have posted this is a forum for people with Multiple Sclerosis, and while we try to answer any and all questions that come our way even if it isn't MS related, you might be better off putting this question in a different forum. Unfortunately I'm not sure which one to suggest. Good luck with finding answers - it's bad enough to be an adult and have problems but it is just wrong for young children to have to suffer.
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Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
