Resolved question:
Good day, my name is Tiffany Barker and I'm a 25 year old woman living in Johannesburg, South Africa. In 2010 I received the 3 doses of the Gardasil vaccination throughout the year, I was extremely fatigued the whole time, which I thought was just tiredness from studying so hard for my honors. But I could barely study for an hour before I needed to lie down again. One morning in February 2011, I woke up with agonizing pain down both my legs (at the back and front) and under the soles of my feet - the pain continued for weeks after and the only thing that helped with my pain was any kind of opiate. I was placed in hospital for 2 months where i had a Doppler done, a lumber puncture and various other tests, and was placed on all sorts of pain drugs from morphine patches, MST, intravenous cortisone 500mg per day and multiple pethadine injections. The pain never let up and all the test results came back normal. In March 2011 I developed genital herpes on my vagina, which the gynecologist said it was the worst outbreak he has ever seen. I was put on Zelitrex to get rid of the blisters and calm the virus down. The blisters disappeared within a week or two, but the pain still persisted. My parents took me out of hospital as nothing any doctor was doing was helping and all the pain medication was giving me bad side effects. So I went to see a specialist called Craig Golding who sat with me for two hours and asked all sorts of questions and finally when I told him I had a vaccination last year and specifically the Gardasil vaccination he thought I had heavy metal poisoning. He did the necessary blood tests and the result came back with high levels of aluminum (which is a nerve poison) and treated me by chelating me. Most of the doctors I've seen since then think that it has nothing to do with the vaccination and just tell me I have really bad post herpatic neuralgia. But in my heart I have always felt like they were missing something, especially because my pain is more of a deep aching feeling rather than a burning sensation. From the day the pain started in 2011 till this day I haven't had a day without pain and am still battling with it and it has ruined every part of my life and debilitates me to the point that I can't even drive or work. I've been to see various neurosurgeons who placed me on pethadine or DF118 to help with the pain, which did really help until my body needed higher and higher doses till eventually I had to stop and get myself off the drugs which was absolutely terrible. I have been on opiotes 3 times and have fought on my own to get off them, just to have that bit of relief that they gave me for a few months. I've had various operations to try help with the pain such as injections into my dorsal root ganglions, a spinal block, two spinal cord stimulator operations and in 2012 I had a intrathecal morphine pump placed in my stomach and was placed in ICU for three weeks while they slowly increased my dosage. I go every two months to my neurosurgeon to get the pump refilled. It has given me some quality of life and I have my good and bad days, with the pain being more manageable each day, but is still to painful for me to work as any movement or activity causes me more pain. I started to put on so much weight in such a short time and went from 60kgs to 80kgs within a few months and have battled to loose any of it and I've tried limited exercises, been placed on Duronmine to decrease my appetite to the point that I barely eat anything these days and have tried every diet under the sun. About 6 months ago I developed a lump on my neck, then 3 months ago I developed a lump on the side of my head which was extremely painful and the doctors couldn't explain what it was. About a month ago I developed a hard lump in my forearm which was excruciating and I couldn't even use my arm. The doctors still couldn't tell me what these lumps were and they tried to put me on cataflam incase it was an inflammatory problem, and sent me to a vascular specialist to check for any clots or problems with my arteries. After all the scans and tests everything came back normal and my arteries worked fine. Although the vascular specialist mentioned that the layers of muscles in my legs were very strange and showed vast differences in the top and bottom layers of muscle. Since the lumps started to grow my pain has become so much worse and my legs have become so hard and tight - it's feels like I've been gyming on my legs for so long, but I barely am able to even walk around much. I have been in so much pain that it doesn't even feel like my morphine pump is working or helping - it has got out of control again and we don't no what to do for pain. I recently went to see a specialist neurologist, Dr Giampaolo, who immediately saw my weight gain and the lumps in my arm, whilst I told him my whole medical history since 2011. He immediately told us he knew what I had, and only knew about it because another doctor had brought it to his attention that she had it. He said I had dercum disease.. Which makes so much sense as all oF my symptoms match to those of someone with Dercum disease. He said he would research to see if there is anything to help with the pain, because it's an incurable disease and the second most painful in the world. We have continuously tried to contact him for more information and something for pain but he just won't get back to me or my parents. We also updated my GP who wouldn't give me anything for pain and neither would my neurosurgeon. I am at a point where the pain is so bad that I'm living from hour to hour and the pain is so excruciating that I can't sleep and just cry all day. I feel that if I don't get any help for pain I won't be able to cope anymore and at the end of so many days I just feel like ending things as I'm barely living and just have to deal with the pain all day everyday. I know the disadvantages of being on an opioite for a long time, but they are the only thing that actually gives me some relief and quality of life and I'd rather have that then have nothing everyday and end up dead. All the doctors have seemed to just give up on me and even though they know I'm in pain they won't help me or give me anything - they just think I'm meant to deal with the pain - which is humanly impossible (especially as I'm coming up to my 5th year of pain). My parents have even tried getting me marijuana oil and suppositories which don't help much. I'm at the point where I'm desperate for help and can't continue like this much longer. My question to you is do you know of any medication I can take for dercum diseases?? I know of lidocaine infusions which I have previously tried and it didn't help. Do you also know of any online doctor that I could possibly get a prescription from for pain medication?? My parents and I are at a complete loss and don't no what else to do to try get something for me for pain. Please help me with what information you can and with a possible online doctor who would help me with pain meds, before this pain becomes the end of me. I'd really appreciate any help you can offer me. Thank you for your time and for reading my story. Look forward to hearing back from you.
Submitted:
4 Days
Category:
Allergy and Immunologist
Hello,
Thank you for your query at DoctorSpring.com
I understand your concern.
Dercum Disease is an extremely rare manifestation, and can only be diagnosed by physical examination.It is 20 times more commoner in women, and tends to run in families.
Dercum's has the following four cardinal manifestations, although all the symptoms necessarily need not be presentv:
1) multiple, painful, fatty masses ( mostly on the trunk, arms and legs ); (2) generalized obesity, usually in menopausal age, however can be noticed in young women too (3) weakness and fatigability; and (4) mental disturbances, including emotional instability, depression, epilepsy, confusion and dementia.
You do have features suggestive of Dercum's however the doctor examined you, is the best person for a conclusive diagnosis.
Dercum's does have very limited treatment options. The main treatment modality is secondary support, i.e pain management, weight reduction in obese patients, surgery for the most painful lipomas, e.t.c
Lidocaine infusion is the first mode of treatment. Apart from the infusion, now there are some recent lidocaine patches available in the market, that are effective in relieving the pain in the most painful sites ( Lipoderm ) If it fails some recent studies have concluded Methotrexate is useful in relieving the neuropathic pain associated with Dercum's. Apart from that it was always believed that traditional analgesics such as NSAIDs are not useful, but some recent studies contraindicate this theory, rather NSAIDs brought down the pain considerably in most Dercum's patients.
Unfortunately, i won't be able to arrange an online prescription for you. You need to contact your family physician, explain your symptoms, and you can also discuss the alternate treatment options i mentioned ( Methotrexate + Lidocaine patches ). There is no provision of retrieving an online prescription. But i am sure your family physician will be able to help you with a prescription for the drugs i mentioned.
Feel free to follow up,
Regards.