Dear Frances, Hope you had an enjoyable holiday and that you weren't too uncomfortable with the EM.
Thanks for such a comprehensive reply re The Royal Free. I don't know who my appointment is with, the letter just says ' a member of the rheumatology team,' I can only hope I get someone like your Dr. Ong who seems knowledgeable about EM and listens to what his patient is saying.
I don't know what, if any treatment you have had/tried prior to your visit. My drugs list for EM started with Lyrica (pregabelin) which made things worse - then amiltriptyline which helped for a while but then ceased to help. Haven't tried the Duloxitine due to being unwell recently. So at present not taking anything for the EM bar the odd sleeping pill to help me get a few hours sleep now and then. I take daily thyroxine for low thyroid function which recently went haywire for no known reason making me feel dreadful. My general health is pretty poor due to my lifetime smoking habit and since breaking my wrist quite badly a couple of months back I am now confined to the house as I can't drive yet. Bit of a hopeless case all round really but hey ho just try to keep going.
Did you take anything like photo's/information with you to the consult? I have read so much about EM that my brain feels overloaded at times. Think I'll just take a brief potted medical history and a description of when EM first showed its presence and how it has progressed. My feet don't get cold like yours unless I cool them. Recently bought a portable air conditioner which is a great help at night but only if the restless leg syndrome stays away. Even when the weather is cooler and therefore the feet, they still feel like they are hot and sting like having them in a patch of nettles along with buzzing sensations. You would think we make our syptoms up they are so weird at times.
Anyway, I will let you know who I saw and what happened after my consultation. Do let me know what happens with you and any treatment you have.
Thanks again for replying with so much info.
Tilly
Hi Tilly - sorry not to reply sooner, have been away on holiday (northwards, needless to say!!) Yes, I saw Dr Ong at the Royal Free and have another appt to see him in late September. I thought he was nice, familiar with EM, took lots of time and also has run a battery of tests on me and has some more coming up - thermal imaging and thermal threshold tests, whatever those are). They are mostly to make sure I haven't got any other underlying condition (I think). The treatments he mentioned as possible for me are something called Iloprost, which is a kind of infusion thing you have to have over a few days, or Losartan, which is a drug. They are both aimed at dilating the blood vessels, as he thought I might have a type of EM which is related to over-constriction (my feet get really cold as well as really hot). I think they really try to listen to your experience and symptoms and work out what might be helpful for you, specifically. I haven't tried either of these yet as I'm waiting to hear about the other test results.
Who is your appointment with? Does this mean things have got worse for you?
Frances
tillyp said:
Hello Frances, Just a quick ask. Am I right in thinking that you have been to the Royal Free Hospital in London for your EM? If so, can you tell me how you got on, what treatment/tests you were offered, if any. I have an appointment there at the Rheumatology Dept., on 13th September. Thanks, Tillyp
FrancesE said:
Good luck with the Cymbalta Tilly. I read some US research that said a lot of people find it really helps (Dr Jay Cohen's website) - so fingers crossed! Let us know how you get on.
I've now gone up to 60 mg duloxetine and managed to come completely off the Gabapantin. This seems to have helped with my fibromyalgia pain too. The only downside is I'm finding sleeping a problem again. I've gone from sleeping from 4pm - 6.30 am daily to getting an hour or two before waking up again, I usually end up sleeping in about 4 blocks of wake, sleep, wake throughout the night.
I have been taking neurotransmitter supplements in place of cymbalta,I take one for my cortisol level, for my seratonin,changed my diet no gluten, no wheat no dairy and I have noticed a decrease in my flare ups
I have been taking neurotransmitter supplements in place of cymbalta,I take one for my cortisol level, for my seratonin,changed my diet no gluten, no wheat no dairy and I have noticed a decrease in my flare ups
my seratonin is very low, my cortisol was very high, so instead of taking a Rx my foot doctor put me on neurotransmitter which helps with your nerves transmitting messages. cymbalta helps with your seratonin and seratonin is also responsible for how you perceive pain and sleep(I thought it only had to do with depression)so instead of putting me on cymbalta the neurotransmitter supplements helps in the same way without the side effects. If you live near New York City or Long Island I can give you the name and phone # of the doctor who is treating me
Tilly, I didn't take anything with me except the latest blood test results, but my GP was quite good about forwarding all the previous letters so they had some previous info to go on.... I don't think they would mind what you do, they seemed pretty tolerant and nice to me! It sounds as if you have been having a horrible time lately; the summer is a rotten time for EM all round anyway. Hopefully the cooler weather will help. Good luck with your consultation in September and let me know how it goes.
Frances
tillyp said:
Dear Frances, Hope you had an enjoyable holiday and that you weren't too uncomfortable with the EM.
Thanks for such a comprehensive reply re The Royal Free. I don't know who my appointment is with, the letter just says ' a member of the rheumatology team,' I can only hope I get someone like your Dr. Ong who seems knowledgeable about EM and listens to what his patient is saying.
I don't know what, if any treatment you have had/tried prior to your visit. My drugs list for EM started with Lyrica (pregabelin) which made things worse - then amiltriptyline which helped for a while but then ceased to help. Haven't tried the Duloxitine due to being unwell recently. So at present not taking anything for the EM bar the odd sleeping pill to help me get a few hours sleep now and then. I take daily thyroxine for low thyroid function which recently went haywire for no known reason making me feel dreadful. My general health is pretty poor due to my lifetime smoking habit and since breaking my wrist quite badly a couple of months back I am now confined to the house as I can't drive yet. Bit of a hopeless case all round really but hey ho just try to keep going.
Did you take anything like photo's/information with you to the consult? I have read so much about EM that my brain feels overloaded at times. Think I'll just take a brief potted medical history and a description of when EM first showed its presence and how it has progressed. My feet don't get cold like yours unless I cool them. Recently bought a portable air conditioner which is a great help at night but only if the restless leg syndrome stays away. Even when the weather is cooler and therefore the feet, they still feel like they are hot and sting like having them in a patch of nettles along with buzzing sensations. You would think we make our syptoms up they are so weird at times.
Anyway, I will let you know who I saw and what happened after my consultation. Do let me know what happens with you and any treatment you have.
Thanks again for replying with so much info.
Tilly
Hi Tilly - sorry not to reply sooner, have been away on holiday (northwards, needless to say!!) Yes, I saw Dr Ong at the Royal Free and have another appt to see him in late September. I thought he was nice, familiar with EM, took lots of time and also has run a battery of tests on me and has some more coming up - thermal imaging and thermal threshold tests, whatever those are). They are mostly to make sure I haven't got any other underlying condition (I think). The treatments he mentioned as possible for me are something called Iloprost, which is a kind of infusion thing you have to have over a few days, or Losartan, which is a drug. They are both aimed at dilating the blood vessels, as he thought I might have a type of EM which is related to over-constriction (my feet get really cold as well as really hot). I think they really try to listen to your experience and symptoms and work out what might be helpful for you, specifically. I haven't tried either of these yet as I'm waiting to hear about the other test results.
Who is your appointment with? Does this mean things have got worse for you?
Frances
tillyp said:
Hello Frances, Just a quick ask. Am I right in thinking that you have been to the Royal Free Hospital in London for your EM? If so, can you tell me how you got on, what treatment/tests you were offered, if any. I have an appointment there at the Rheumatology Dept., on 13th September. Thanks, Tillyp
FrancesE said:
Good luck with the Cymbalta Tilly. I read some US research that said a lot of people find it really helps (Dr Jay Cohen's website) - so fingers crossed! Let us know how you get on.
Thanks for all the information you have given me, I really appreciate your help. Think I will have to ask my GP to do the same for me but won't hold my breath.
I have been pretty miserable these last few months, sorry for whingeing on about it to you. I am grateful for the cooler weather these last few days which has reduced the daytime flaring episodes.
I hope you get some good results from any of the treatments offered to you. One can only hope.
Thanks again.
Tilly
FrancesE said:
Tilly, I didn't take anything with me except the latest blood test results, but my GP was quite good about forwarding all the previous letters so they had some previous info to go on.... I don't think they would mind what you do, they seemed pretty tolerant and nice to me! It sounds as if you have been having a horrible time lately; the summer is a rotten time for EM all round anyway. Hopefully the cooler weather will help. Good luck with your consultation in September and let me know how it goes.
Frances
tillyp said:
Dear Frances, Hope you had an enjoyable holiday and that you weren't too uncomfortable with the EM.
Thanks for such a comprehensive reply re The Royal Free. I don't know who my appointment is with, the letter just says ' a member of the rheumatology team,' I can only hope I get someone like your Dr. Ong who seems knowledgeable about EM and listens to what his patient is saying.
I don't know what, if any treatment you have had/tried prior to your visit. My drugs list for EM started with Lyrica (pregabelin) which made things worse - then amiltriptyline which helped for a while but then ceased to help. Haven't tried the Duloxitine due to being unwell recently. So at present not taking anything for the EM bar the odd sleeping pill to help me get a few hours sleep now and then. I take daily thyroxine for low thyroid function which recently went haywire for no known reason making me feel dreadful. My general health is pretty poor due to my lifetime smoking habit and since breaking my wrist quite badly a couple of months back I am now confined to the house as I can't drive yet. Bit of a hopeless case all round really but hey ho just try to keep going.
Did you take anything like photo's/information with you to the consult? I have read so much about EM that my brain feels overloaded at times. Think I'll just take a brief potted medical history and a description of when EM first showed its presence and how it has progressed. My feet don't get cold like yours unless I cool them. Recently bought a portable air conditioner which is a great help at night but only if the restless leg syndrome stays away. Even when the weather is cooler and therefore the feet, they still feel like they are hot and sting like having them in a patch of nettles along with buzzing sensations. You would think we make our syptoms up they are so weird at times.
Anyway, I will let you know who I saw and what happened after my consultation. Do let me know what happens with you and any treatment you have.
Thanks again for replying with so much info.
Tilly
Hi Tilly - sorry not to reply sooner, have been away on holiday (northwards, needless to say!!) Yes, I saw Dr Ong at the Royal Free and have another appt to see him in late September. I thought he was nice, familiar with EM, took lots of time and also has run a battery of tests on me and has some more coming up - thermal imaging and thermal threshold tests, whatever those are). They are mostly to make sure I haven't got any other underlying condition (I think). The treatments he mentioned as possible for me are something called Iloprost, which is a kind of infusion thing you have to have over a few days, or Losartan, which is a drug. They are both aimed at dilating the blood vessels, as he thought I might have a type of EM which is related to over-constriction (my feet get really cold as well as really hot). I think they really try to listen to your experience and symptoms and work out what might be helpful for you, specifically. I haven't tried either of these yet as I'm waiting to hear about the other test results.
Who is your appointment with? Does this mean things have got worse for you?
Frances
tillyp said:
Hello Frances, Just a quick ask. Am I right in thinking that you have been to the Royal Free Hospital in London for your EM? If so, can you tell me how you got on, what treatment/tests you were offered, if any. I have an appointment there at the Rheumatology Dept., on 13th September. Thanks, Tillyp
FrancesE said:
Good luck with the Cymbalta Tilly. I read some US research that said a lot of people find it really helps (Dr Jay Cohen's website) - so fingers crossed! Let us know how you get on.