Hi, i have now been major flare free for a year now and wanted to share with you what i am taking which has helped me!
I take 30mg Duloxetine in the morning and 30mg Nortriptyline at night. Although i still have the burning feet at times it is nothing like as severe as it used to be. I suffer with my feet, hands and have IBS as a result of the condition. I have been on a range of medication over the years and my pain specialist has been fantastic. I live in Nottingham, UK.
However, even though i am sleeping better i have had dreadful bouts of fatigue, so bad that i struggled to function. I would come home from work and need at least an hour sleep before i could do anything. I had a full scan of blood tests to check that there wasn’t something wrong and they came back all clear. My pain doctor wondered whether it was my medication and we have played about with the amount i take but that made no difference to the fatigue, only to the erythromelalgia. I am now being assessed for chronic fatigue syndrome. I live a healthy lifestyle, i exercise, eat well, drink plenty of water so i just didn’t know, neither did the Dr, what to do next.
However, I believe that i have now found the answer to my fatigue and IBS and i feel a different person!!! I was talking to my work colleagues about the fatigue and one of them suggested i try some of the Forever aloe vera products which were known to help with digestive issues, tiredness and lack of energy. Desperate to try anything i started on taking a shot of aloe vera gel once a day and bee pollen natural supplements twice a day. Within 2 weeks i started to realize that i wasn’t as tired and even managed some evenings not to have to have an evening sleep. Then just under 4 weeks i felt energized, motivated to want to do more things and just felt so much more positive. People also said that i almost glowed, when you are not permanently exhausted i am not surprised i look as well as i feel so much better. For me this combination of pure aloe products, many products apparently on the market are not made from the inner leaf aloe but from the outer leaf which is not nearly as effective so beware when looking at products, has improved my wellbeing no end which i know living with our condition any small improvement is huge!
Hi
I also live in the UK and am interested in the medication you are taking that you feel has reduced your EM burning symptoms and flares. I was prescribed Gabapentin (Neuronton) for pain reduction however it has hugely undermined my memory and cognitive functioning after only 6 months of using it. I would like to try something else without these side effects, and because Gabapentin doesn’t reduce flares. I get bad flares in my feet day and night from Autumn - Spring. Flares are slightly less frequent in the summer months. Did your pain Consultant or GP prescribe the tablets you are taking that have reduced your EM flares. I’m hoping that my GP would be able to prescribe the tablets you are taking without requiring a referral to the Pain Clinic.
It’s fantastic that you are feeling so good. I’m looking into the Forever Aloe products you mentioned in your post. Thanks for telling your experience 
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blockquote, div.yahoo_quoted { margin-left: 0 !important; border-left:1px #715FFA solid !important; padding-left:1ex !important; background-color:white !important; } Hi, sorry to hear you are suffering so much. I got my medication from the GP obviously recommended by my pain clinic. I take 30mg Duloxetine in the morning and 30mg Nortriptyline before I go to bed. I don’t get any side effects and no major flare ups. I didn’t want to say on the site but as a result of my positive reaction to the aloe Vera I am now a Forever distributor and can help supply you if you so wish.Hope that helps and good luck!
Hi, Thanks for your reply.
I’ve looked into the medicine you’re taking in the day, it is a cousin of the medicine I’ve been prescribed for EM. You are taking a very small dose - you’re lucky that a small amount noticably reduces your EM symptoms. I will discuss a possible change of tablet with my GP.
Re Forever Aloe, what would be the monthly cost of the product you said has had such a positive effect on your energy level? I’ve been taking bee pollen daily for about a month but haven’t noticed much difference in my energy, at least not yet.
Thanks
Cat
blockquote, div.yahoo_quoted { margin-left: 0 !important; border-left:1px #715FFA solid !important; padding-left:1ex !important; background-color:white !important; } Hi Cat,Yes I am lucky to be on that small dose. I started on quite a bit higher and have slowly reduced it down, primarily to see if it affected my fatigue. It does appear though that the medication isn’t causing my fatigue but whilst the low doses are working I will stick with it! I take aloe Vera gel everyday as well as the bee pollen. You take a 60ml ‘shot’ a pot costs £21.62 and lasts for about three weeks. How many bee pollen tablets do you take? I have two in the morning then another two at lunchtime which I feel sees me through the afternoon and evening. There are definitely times I feel ready to take the lunchtime ones as I feel myself lulling. Hope this helps.Jo
Hi Joanne
I’ve been very busy selling and buying a new house so rather slow getting back to you.
I would like to try the aloe gel that you use and are selling. I am already taking bee pollen (granules) so I will use both together and hope to see an increase in my energy levels.
It may be easier to contact me on my personal email.
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blockquote, div.yahoo_quoted { margin-left: 0 !important; border-left:1px #715FFA solid !important; padding-left:1ex !important; background-color:white !important; } Hi Catherine,I was just wondering how you were getting on. I hope that after the house move your symptoms have settled down about once all that stress was out the way!Jo