Aa
at my wits end
saw my gp again today ,despite me having painful lumps in my abdomen and
pain spreading allover my body in my thighs upper arms left side of chest and neck and severe pain in the middle of my back.onset since i saw gp 2 weeks ago.last time he said he could not feel any lumps and had never heard of dercums and i do have the symptons this time he was definite that i did not have dercums but it is still fibromyalgia.i know it is more than just fibro as it is not only muscular pain.i also feel hot which is a symptom of dercums.
as well as having protruding ribs and a cough each time i lie on that side with feeling of ribs digging in me.i am in great discomfort in my abdomen and rib area.= with pain in my hands and feet which i believe is nerve pain.
pain spreading allover my body in my thighs upper arms left side of chest and neck and severe pain in the middle of my back.onset since i saw gp 2 weeks ago.last time he said he could not feel any lumps and had never heard of dercums and i do have the symptons this time he was definite that i did not have dercums but it is still fibromyalgia.i know it is more than just fibro as it is not only muscular pain.i also feel hot which is a symptom of dercums.
as well as having protruding ribs and a cough each time i lie on that side with feeling of ribs digging in me.i am in great discomfort in my abdomen and rib area.= with pain in my hands and feet which i believe is nerve pain.
dr still wont budge that i have dercums.he says everything is fibromyalgia.i know different.appt to see rheumatologist but not til november/said my nose pain(nose has been excruciaitingly painful and swollen) was also fibro when having read other comments on med help it is a staph(if spelt right)infection.
Are the lumps randomly located, or are they in the area of lymph nodes? I am wondering if it is an infection. It sounds quite painful. What you describe does sound like Dercum's, but it does not sound like Fibro.
I have Lyme Disease and Bartonella, and I have heard that some people with these tick borne diseases have been misdiagnosed with Dercum's. All of the Fibro symptoms are on the list of Lyme symptoms, along with rib pain (I have that pretty bad), chest pain, abdominal pain, and nerve pain.
Doctors in the UK aren't much more informed that doctors in the US about tick borne diseases, and many patients go undiagnosed or misdiagnosed. Lyme has been called "The New Great Imitator" because it can resemble so many other conditions.
Ask your doctor for a Western Blot for Lyme Disease (the screening test called an ELISA or an IFA is false negative about 30% of the time) and b.henselae (Bartonella).
Ideally you would get tested at a specialty lab. There is one in the States called IgeneX and there is one in Germany called Mikrogen. "Regular" labs used mass produced test kits and often miss signs of the diseases. These two specialty labs do more advanced testing that is more likely to find them.
If you can get to the Breakspear clinic, they are well known for evaluating patients for tick borne diseases and other poorly understood conditions.
I have Lyme Disease and Bartonella, and I have heard that some people with these tick borne diseases have been misdiagnosed with Dercum's. All of the Fibro symptoms are on the list of Lyme symptoms, along with rib pain (I have that pretty bad), chest pain, abdominal pain, and nerve pain.
Doctors in the UK aren't much more informed that doctors in the US about tick borne diseases, and many patients go undiagnosed or misdiagnosed. Lyme has been called "The New Great Imitator" because it can resemble so many other conditions.
Ask your doctor for a Western Blot for Lyme Disease (the screening test called an ELISA or an IFA is false negative about 30% of the time) and b.henselae (Bartonella).
Ideally you would get tested at a specialty lab. There is one in the States called IgeneX and there is one in Germany called Mikrogen. "Regular" labs used mass produced test kits and often miss signs of the diseases. These two specialty labs do more advanced testing that is more likely to find them.
If you can get to the Breakspear clinic, they are well known for evaluating patients for tick borne diseases and other poorly understood conditions.
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