I left my Rheumatoid doctor's office in tears today. My treatment plan consists of one asprin a day. The doctor said all of the other drugs are trials and he doesn't want me to experience the side effects of them. I am frustrated with the level of pain and discomfort I am feeling on a daily basis. It feels impossible some days to make it through a work day as a teacher. I flare up constantly throughout the day. I just wish I could find a doctor who was passionate about helping those with EM. Not sure how aspirin will work, but I will sure give it a try. Anyone have luck with aspirin alone?
Before my pain and horrible looking feet had a name I saw as many doctors from as many specialties as possible because none had any experience with EM. They'd keep passing me on. Heck, I was even referred to a podiatrist. A neurologist is a specialist that could help get you to where you need to be and who you need to see. Where I finally was able to get a diagnosis of EM was at a university hospital pain clinic. You will be their Fascinoma. Don't get discouraged, get educated.
A Vascular Doctor diagnosed me,she put me on 600 mg, of Gabapentin a day. I don't have to be on my feet all day like you but I do still have flare ups. I also have Raynauds so one minute my feet and hands can be burning hot or ice cold. I would ask about trying Gabapentin [Neurontin]. It has helped me some. I hope you find some relief/
Thank you both! So good to hear from others that face EM! I plan to research other docs…saw a Neurologist but was not impressed with this particular one! Will def check out the Gabapentin!
Oops! I meant to say 600 mgs 3x a day.
Good luck!
Hi Libby
I take asprin daily, my gp said it helps to thin the blood and has been successful with many EM sufferers. I also take 5 X 300mg gabapentin daily too which had been helpful for many years until recently. My GP doesnt want to increase my meds without specialist advice so I've now been refeered to a pain clinic.
I wish you lots of luck in getting the support of your doctors to try out different medications. x
The aspirin may help. Probable not, but may. I was told (Mayo Clinic) that small doses (baby aspirin) several times a day was much better than a full dose (or more). I did try, it did NOT help. It was a Dermatologist that was more helpful to me than any other at Mayo. Your rheumatoid doctor is the type that is supposed to know about things like this. Warning: if you are cooling your feet off in water like we all do (did) get them out. If you start having feet in water for 12 hours a day, you will get sores/wounds/ulcers on your feet. I did and have been working for a year to get rid of them. Wound healing on the feet when you have EM is VERY slow. I have another 6 month to a year to get them healed up. When you see pictures of people with EM with ulcers/wounds on their feet, that was most likely caused by water, not by the EM. Instead, use a fan, air conditioning, keep your house/car at 55 degrees, ice (but not very long or not directly on the skin as you don't want frost bite) AND use lots of cream on the condition (feet, hands). Don't let it dry out and crack. All creams are better than nothing. I use Elta but anything works. If you get wounds, get them healed now. Go to a wound center. The nurses are much better than most doctors.
Libby, I have EM and have been taking a full dose aspirin (325 mg) per day to keep the burning pain down to a minimum. I was finally diagnosed with this condition in Nov. of this year...and I've dealt with it, not knowing what it was, for years! This condition is secondary to my blood condtion, Essential Thrombocytosis. I find that when there's a flare, lying down and elevating my legs will help and I was given a strong pain medication to use at other times.
With all my health issues, I consider it a blessing just to know what's wrong with me! I also have Bronchiectasis and Asthma; Fibromyalgia and I'm on Coumadin because of blood clots. I had a bilateral stroke in July of 2010 and they found an additional clot in August of this year. Belive it or not, I'd consider it a blessing just to have ONE thing wrong with me!
I sure hope you find relief quickly and please know that the aspirin does help! Hope to 'talk' with you again.
Merry Christmas!!
Louise
Go to a vascular physician, and yep, everything is trial and error, and everyone responds to the various treatments differently. You'll have to find a medico who is willing to take some risks and explore. My team and I look at it as a challenge, an on going experiment. And at times this can be a little fun..Good luck.. Vic
Jim Weed Alaska said:
The aspirin may help. Probable not, but may. I was told (Mayo Clinic) that small doses (baby aspirin) several times a day was much better than a full dose (or more). I did try, it did NOT help. It was a Dermatologist that was more helpful to me than any other at Mayo. Your rheumatoid doctor is the type that is supposed to know about things like this. Warning: if you are cooling your feet off in water like we all do (did) get them out. If you start having feet in water for 12 hours a day, you will get sores/wounds/ulcers on your feet. I did and have been working for a year to get rid of them. Wound healing on the feet when you have EM is VERY slow. I have another 6 month to a year to get them healed up. When you see pictures of people with EM with ulcers/wounds on their feet, that was most likely caused by water, not by the EM. Instead, use a fan, air conditioning, keep your house/car at 55 degrees, ice (but not very long or not directly on the skin as you don't want frost bite) AND use lots of cream on the condition (feet, hands). Don't let it dry out and crack. All creams are better than nothing. I use Elta but anything works. If you get wounds, get them healed now. Go to a wound center. The nurses are much better than most doctors.
I so get the comment about the water, I use water therapy, a fare bit in summer, BUT, never for longer then an hour at a time, and max 4/24. It is heaven when i do, and hell if over done.. As for creams..I cant touch any, it makes my skin explode,
WOW Libby,
these photos look familiar. my syptoms look the same too. The next flare up I have I will submit some photos too. I do take a aspirin a day but ended up on other medications in order to stop the burning hip, feet, ears and hand pain. I take neurontin and lyrica and that prevent the pain but I still have the redness. If I miss a dose, the pins and needle symptoms in my feet feels so bad I can hardly walk at times. I have neuropathy PDN. I hope you find a medication that work for you.
Do you all wake up in the middle of the night with pins and needles in your hands and feet?
I do sometimes, getting to sleep is the hardest for me, My partner experienced what it's like for me to not be able to sleep for the first time last night (Meds aren't working as well as they used to plus we dont live together) All I wanted to do was get up and put them in a cold bath but it was the middle of the night and in his home so laid in bed in angony trying my best to not make too much of a fuss..!!
Libby,
In answer to your question, I do get pins and needles in my hands during the night.
Laura,
Your comment about the effect on your partner is why I have chosen to abstain from dating/relationships for now. I am concerned that my medical needs will be too much of a drag on a relationship. I sleep with a body pillow and another pillow to keep my legs and feet elevated, which helps with the pain. Who would want to share a bed with a person and pillows that take up so much room???!!! Plus, I am worried about the progression of the disease and would not want my partner to have to deal with that. For now, my emotional support comes mainly from my sis. I sure miss having a man around, though...
Be very careful putting the feet in too much cold water. Cold water breaks down the skin and can give you ulcers. I have first hand experience with this. It will take at least one more year to get my feet healed up.
Use a fan, air conditioning, cold packs and/or occasionally use ice. Lift your feet higher than your heart (if this helps...it does NOT help me). Use lots of lotions and creams. Keep your feet protected from the elements of water and air. Apply the lotion/cream at least two times every day.
Jim, what about swimming for exercise? Can too much swimming be a negative thing? Or if the water is not to cold, should it be fine? Thanks!
no I have not I am having a little help with a ketamine topical that is prescribed buy my doctor
Dale
You are right Libby, the swimming would be great. I need to heal up my feet a bit longer before I do that. I used to walk 2 miles a day 6 days per week. I have always disliked swimming but need to do it anyway. Thank you Libby. I have trouble following a conversation on this website. Not the most friendly site.
Cindy
I was in a period of remission when I met my partner, put it to back of my mind and really hoped that the symptoms wouldn't come back. He did know about my EM tho before meeting him because he was a friend of a friend and I'd been chatting to him for about 4 years on facebook. I don't think he can understand just how bad the pain can be tho. I had yet another sleepless night last night which he seemed oblivious to. I think I managed a couple of hours before he woke me up... ARRGH To be fair tho I've been ill (Various reasons) for about 14 months of out 18 month relationship so he's been great within that respect..
Jim, why have you found this site a little unfriendly..?? I have found lots of kind, supportive friendly people on here, shame you haven't found the same thing..!
I am sorry Cindy, I did not communicate very well. Please forgive me and I will try to say that again.
The people on this web site are wonderful. They are friendly, supportive, helpful, willing to listen. However, when I try to go from one conversation to another (within the website) I get lost within the website. I am not the most computer literate person in the world and the problem may be mine and mine alone. But I have trouble finding that next conversation I want to check.
Cindy, I checked your web site before I went to write this e-mail and found you had made a comment on some of my photos. I had no way of knowing you had made that comment unless I checked your profile/website. I wonder how many conversations I have missed by lack of notification??? Maybe the server was down?
Please let me say it again, The people on this site are very friendly. I did NOT find the people unfriendly. It is navigating the site I find unfriendly. Jim