I found out something new yesterday regarding Fibromyalgia thanks to Adrienne at the About.com: FM & CFS Blog. In her post, Adrienne talks about how it is common for Fibromyalgia patients to have lipomas, which are non-cancerous tumors that are lumps of fatty tissue beneath the skin. In “normal” people lipomas are not painful but they can be very painful for FM patients thanks to our bodies being hypersensitve to pain.
I visit the massage therapist on a monthly basis and I always assumed, like Adrienne, that my knots or lumps were due to knotted muscles and myofascial pain knots, which I was told I had in the past. The therapist has to massage over these lumps for a long time and they still don’t disappear. I just end upbeing extremely sore in those areas.I also tend to have extremely lumpy breasts and I wonder now if some of these lumps are lipomas.
Once your doctor has determined whether or not you do truly have lipomas, treatment options are available if they are causing you pain. Treatment for lipomas include hydrocortisone shots or surgery.
What are the symptoms of lipomas? According to Web MDlipomas are typically:
- small and felt just under the skin (size is 0.4 in. to 1.2 in.).
- movable with a soft, rubbery consistency.
- are painless (but can be painful in FM patients).
- grow very slowly and will stay the same size for years.
- becomes bothersome when size increases and depending upon the location.
Anytime you feel any type of lump you should see your physician immediately to rule out cancer.
Have you ever heard of lipomas? Have you been diagnosed with lipomas? Tell me in the comments.
There is a disease called Dercum’s Syndrome that has as one symptom painful lipomas and as the other, the inability to lose weight at all. Dercum’s patients keep getting heavier and/or reach a large size and can’t lose weight. Doctors have taken Dercum’s patients and put them on strict diets in which they observe all meals and control all oral intake, and yet, still, they are unable to lose weight. Even with OT and PT guiding them to whatever activity increases they can tolerate, they do not get any better. The disease affects mostly women between 30 and 60, although people can get it at a younger and at an older age.
I have a LOT of lipomas, and I am unable to lose weight no matter what. I often am too fatigued and/or in too much pain to eat at all, and yet, I will still not lose an ounce even if the problem has gone on for a couple weeks. So while fibro patients may have lipomas, it may be the supposedly rare disease of Dercum’s Disease instead of fibro with lipomas in some cases – such as when the lipomas become painful and the person is fat, and their fat hurts (which is techinically impossible because fat cells supposedly do not have nerve cells attached).
I learned of this from a submission on the For Grace website, which is dedicated to obtaining pain relief for women that is on a par with pain relief available to men – something which is not happening for women yet. While I could probably get you the specific web address, I suggest instead that women investigate the whole of the offerings at ForGrace.org. You will not be disappointed.
I too have a lot of lipomas in my belly and in a few different places.They seem to keep popping up and im not sure why.I wonder if the surgery makes them grow faster,they say trama does,but do they really know?? I just know that I hurt very badly from them and with my insurance they cant and wont take enough of them out at a time and my belly alone is going to look horrid before its over.I dont know how to go about getting the docs to help me!!They have not even done tests to see really just how many are in there cause if they did I think they would do a different surgery to remove them.Do you have any IDEAS???
I have them also, they are very painful and two are pressing on my spine area. they are growing under my skin on my upper arm, my thighs, my hips (those hurt also). I am miserably in pain always
The trauma of removing them .. the cutting through the fat cells and tissue will continue to cause more to come back . Pain mane me too is the only treatment and that is not very good
I have had an Ultra Sound on two of mine that are located just at the bottom of my rib cage. They were benign. But, I have them in my arms and now they are starting in my legs. I have a really big one on my ankle/foot area…..I’m to self conscious to wear a dress any more. I wish there was something they could do besides cut them out….
I’m sorry y’all have the same problems, but I’m glad to know I’m not the only one with this problem. I was concerned that if I’m doing this under my skin, what am I doing inside?
This is me to a T! Non one believes me and I just keep getting fatter! I had 3 Lipomas removed last week.
Thanks for the info!
I am gaining weight., too and cant seem to lose. I may drop a lb. here and there, but I just gain it back. I’ve gone on the Paleo Diet to see if that would help. So far, no. But, I have to admit, I do cheat here and there.
Cut out all the things that are bad for Fibro; Vegetable oils, sugar, wheat (all flour based products), processed foods. Eating a health paleo diet will do wonders for your weight and your Fibro. I love nearly 3 stone and it’s helped my Fibro immensely. The lumps are something I haven’t been able to fix, but know they are part of the Fibro condition, caused by defecctive cells in our bodies.
I have Dercum’s. No one yet knows why the lipomas hurt so badly. I had a few of the worst removed 5 years ago. This helped tremendously but they are growing back, along with new lipomas now. Still, I had about 4 yrs of relief.
I think there is probably a link between how much you “move” and a tendency to develop “fatty” or “adipose” benign tumors. unfortunately the opposite does not seem to be true: starting an exercise program will probably not beat back lipomas once they grew but they seem to have to be excised.
I have had 2 if these, one on each shin just below the knee. They are 4 and 5 inches long and about 4 inches wide each. They bulge out and jiggle like they are full of pudding. Very painfull underneath the fatty tissue. Can’t afford Lipo, so I can’t wear shorts in the summer. I hate them, but have to live with them. Losing 40 pounds did not make them 1 oz. smaller. I got these when I was still able to move and exercise.
I knew for a very long time that i had something in my belly that felt like a knot that hurt.I went to many different doctors and none of them could find anything that was the cause of my pain.They all pretty much said I was making it up,well many many years later come to find out I have LIPOMAS and they hurt very badly and my PCP doctor says that they should not.Well I have news for him cause he does not live in my body and have to deal with the pain that I do.Now I can only have 4-5 removed at a time and every 90 days,well let me tell you with the amount of lipomas I have in my belly I will look like I have become a carving board.I cant deal with the fact that I have so many of them in there and that I may just have to live with them and learn how to deal with the pain. With the fibromyalgia its hard cause I already had so much to deal with now these.How much can and is one person expected to handle in one life time? Some days its just too much!!
I have the same thing im trying hydrogen food grade peroxide therapy at this time what i have read about the therapy is no disease can live in a oxiginated environment just started today no sugar today at all please pray i too am in exyreme pain hating life ugh
There is 3 different types of Dercums Disease DD, It is possible to have two types at one time. The lipomas are in your fat vs.fibro in your muscles. Rub muscles you can get the knots out. Not so for lipomas. With that said there has been succes witl lympthatic drainage and removal but most often they grow back.
I suffer 2 types of Dercums & also have Fibromyalgia.
I can honestly say as many similarities as there are there are also differences.
As you say one is fat one is muscle.
Im also not obese & am able to lose weight.
I think this issue much more common than has been thought..would like to find out how many are afflicted, and how genetics might be involved.
I have them on my thighs and right under where the breasts meat the ribs, and they are so painful! I can barely stand to wear a bra. The lipomas (or at least that is what I think they are) extend up into the lower portion of each breast. They are all painful when touched. i have had them for a long time in the thighs and only recently under the breasts. I have had fibromyalgia now for about 23 years (since it was diagnosed) but I am not sure which specialist to see regarding the ever-increasing pain and what to do about the lipomas. Any input is greatly appreciated. Thank you.
Sandy I have Dercum’s Disease, and it sounds like you do too. It has many of the same symptoms as fibromyalgia, but includes painful lipomas and/or painful areas of fat. Most doctors have never heard of Dercum’s Disease. Dr. Karen Herbst in Tuscon is the world’s specialist in Dercum’s Disease. See lipomadoc.org for tons more information.
I had one under my left breast……while having a Mammogram, it showed up as a mass……it was Biopysed and found nothing. I don’t have Mmograms any more. I’ve decided if I didn’t have lumps, I wouldn’t have breasts. I’ll be 75 in October.
Hello everyone I live in surrey bc , recently I have been having excruciating sharp and needle pain almost everywhere I have lipomas . I got rid of one that I believe was the largest in size and definitely very painful on left side of my tummy , doctors and oncologist at first simply would say oh lipomas are just fat tissues deposited on under the layer of your skin , I have so many most of them are beneath my ribcage and just in the ribcage both the sides , I definitely think that size does not matter but the location as described above makes a huge difference when it comes to pain as it rubs inside of the layers of your bones and it can be very painful at times , if you have to lift something or if you accidentally get bumped by the edge of the walls even when somebody lays their hand just for a sake of joke not knowing or having awareness , it’s definitely breath taking , the ones at the back of my spine hurts throughout the day causing the lower lumber discomfort and burning sensation but yet some doctors would just have the nerves to tell you it’s benine and it’s really nothing to worry about !
What necessary step should I be taking or how do I explain this in terms of medical ? This isn’t the only issues but there are many more complications that I am living with but it’s also very tough to convince doctors these days the level of pain an individual may go through , this is really when the debate continues or dome sort of argument doctor vs patients , they are the 1st ones to say oh Jimmy is different from jack and so is Kelly from Carlson , but it’s funny and makes you wonder a lot when reverse that same conce in terms of letting them know in some cases such as when you really have to tell them my body chemistry is not same as the person you are talking about ! This is when they don’t have an answer people …………………….! PAIN IS ALL YOU ARE LEFT WITH !
Hi There,
I just recently started getting these lumps, first my ribs, then stomach, now thighs and inner knees. They seem to hurt when they are new but then stop hurting after a while. Then sometimes around my period they hurt again for a few days. Not severe pain but just like a soreness.
Not sure if this is dercums? Is it just a mild case?
Since the lumps started 6 months ago I have actually lost 30 lbs by cleaning up my diet, now I’m about 10 lbs overweight.
Any ideas? I had an ultrasound once when they first started and the dr said they were lipomas or fat fells.
I have had fibromyalgia since age 20, then developed strange lumps starting on my knees and arms. Eventually I was diagnosed with Dercum’s Disease. It is so debilitating and I gained a massive amount of weight from lipomas and fluid.
Recently I’ve seen a weight loss doctor and with his help have lost some weight which I couldn’t budge before. The diet is very strict, 800 calories per day and excludes nearly all carbs. I have 2 protein shakes per day and one meal at night consisting of 150 grams of protein and 2 cups of low carb veggies. Add to that two litres of water and I’m improving every day. When I am in Ketosis which takes about 3 days, I am not so hungry and the weigh is slowly shifting making the structure beneath the lipomas less painful
I too have been recently diagnosed with fibro, but my “fatty tissue” I have which is on my upper right thigh on the outside, has been very painful for the last week. It’s always been sensitive but here recently it’s so bad I can’t lay on my right side. I go to the doctor on Tuesday and I’m going to request something be done. I’m not sure which doctor to see to get this taken care of, but I’m desperate. Having fibro means while I sleep I can’t just stay on one side too long or it becomes painful, so with not being able to turn on that side it’s been aggravating. I’m scared though if they cut it out it will grow back. I’ve read about natural remedies with castor oil or sage so that might be a route to take but doctors never go the natural path. Has anybody had any success since the last time you posted? Please give us an update.
I have had fibromyalgia for several years but about a year ago I discovered, what I think are, lipomas on either side of my genital area. I have symmetrical pairs on my back as well. then all of a sudden in the last month I have new ones popping up everywhere. I would say I have about 20 and they seem to be symmetrical. I will feel soreness in an area and then when I feel around, I will discover a deep feeling lipoma. I’ve mentioned it to my rheumatologist but he didn’t seem concerned or have any input. am curious to see who all else has had this experience. You can’t see my lipomas as they seem deep within the fat or under my skin.
I just started having these on my inner thigh. Went for ultrasound . Thought they were lymph nodes. Ultrasound person said they could be fatty deposits. Sarcomas do not show on ultrasound! I had about 10 minutes of relief until I read that they can also be sarcoma. I get a new one every day. The are under the skin and can not be seen only felt. Were yours the same? I have 8 now. Thank you for any onsite you could give.
I just started having these on my inner thigh. Went for ultrasound . Thought they were lymph nodes. Ultrasound person said they could be fatty deposits. Sarcomas do not show on ultrasound! I had about 10 minutes of relief until I read that they can also be sarcoma. I get a new one every day. The are under the skin and can not be seen only felt. Were yours the same? I have 8 now. Thank you for any onsite you could give.
My mother had lipomas. She just called them fat cycts. I developed them about ten years ago by my ankles. An idiot doctor told me it was water accumulation!!!! I also have fibro. My sister and brother ALSO have lipomas. We don’t have them all over though, they are few few, which makes me wonder…….is my immune system holding them at bay? Did they develop when I was sick with some other virus? Answers needed.
ALSO…..should I see a rheumatologist for more doctoring?
Omg…i cannot believe i have found others that have same symptoms as me…its a relief in a way!! Mine are getting worse…have loads in my abdomen…legs and arms and breasts too. Had a very bad rta in 2015…getting more in the abdominal area as a result. Incredibly painful..itchy…convinced bits of my inners are stuck to them!
I was diagnose wih lipomas about 20 years ago. I first noticed them on my upper thighs. In addition, I also developed meralgia paresthetica on my left outer thigh. I have recently been diagnosed with fibromyalgia – trigger points and painful muscles. I was told that the meralgia parastetica may be caused by my sciatic nerve. However, the pain is not in my lower back nor is it in the back of my thigh. It is only in the left lateral thigh from the top of my knee to almost my hip bone. Around the same area are lipomas. There is also crawling sensations and sometimes burning sensations. Sometimes just an incredible itch. I have since developed lipomas bilaterally in my upper arms and those really hurt. All I have to do is touch the area or the muscle and there is pain. Fibromyalgia is an insidious disease. So many systems are affected by it. Most of the time regarding my arms and thighs, I can’t tell if the pain is from exertion, the fibro or the lipomas. It’s truly a pain in the ass.
i just had five remover surgically from my upper arm. I have more but the surgeon said she wanted to know what they were before cutting up my arm any further. They were angiolipomas, which have a blood source. The biggest oldest most painful one was 3.5 cm. I have BAD fibromyalgia, chronic fatigue, insomnia, major depressive disorder, generalized anxiety disorder, these knots all over my body and they HURT despite what all those years of Drs. No claimed they don’t hurt. Liars. I’m the poster child for Dercum’s. I have a huge bulbous mass on my lower belly which hangs on my thigh. I’ve lost a 100 lbs and still, it persists. Many Drs have called it fluid. NOT SO MUCH. MY OTHER SIDE DOESNT HAVE IT. I just had a CT, no answer. Had MRI on my arm, they couldn’t see a thing, though the angiolipomas are visible with the naked eye. I am now so frustrated I cannot stand it. The pain is rough. I have them all around my breastbone, legs, arms, a soft one to the side of my spine. This surgery was hard, and know I’m going to have more. Grrrr
I too have them on my thighs , back and sides I’m always in pain . I don’t want to do anything . Basic chores hurt .the doctor says is nothing but I am living in pain . Health insurance does not cover lipoma removal . Im stuck with the constant pain .please someone help me!
I’m relieved to find that I’m not the only one with these very painful “knots”. I have small ones literally everywhere. Even if I wanted to have them surgically removed it would be impossible. The ones on the outside of my upper thighs and hips cause pain when sleeping on that side. Otherwise they hurt when pressure is applied. I have fibromyalgia and chronic fatigue syndrome and these painful nodules on top of all that is more than I can stand. I’m taking Lyrica, Cymbalta, Tramadol and Percocet (once a day, the only time I am relatively pain free and can function). Has anyone found anything that works better? I’m losing my grip on the knot at the end of my rope.
I see your post was over a year ago so hopefully you have found relief. I have had the fibro diagnosis for 9 years. My current doc has me on Sevella (expensive but worth it) and Celebrex. I can’t tolerate pain meds and tried all the others. I now feel 1/2 human which is a big improvement. Sending hugs
Im not sure if I have Dercums. I have small knots everywhere. Lots of them are painful. I have had fibro for years. What kind of Dr. would diagnose Dercums? Every MD I have asked said that they were lipomas. No worries unless they grow or bother me. But they do bother me. The ones near my spine and my ribs are excrutiating at times!
Im right with you on tht one im at my wits end here too the facia is messed up and have knots everywhere
HELPED
Aiden Lucas
I was diagnosed with fibromyalgia for 3 years, and it was very painful some days. I was taken methocarbamol to relieve the pain. Sometimes it helps and other days it doesn’t. it was killing me for 3 years, doctor said there was no cure. So I tried to live with it and it wasn’t easy.My childhood friend introduced me to Dr George (Good health herbs home),Dr George fibromyalgia herbal remedy cured me within 6 weeks of usage ,am fibromyalgia free now 100%
Can you text me and let me know what helped with these im thinking of trying hydrogen peroxide food grade my number is as follows please help 4122456601 thank you much
I’ve had fibromyalgia for 8 or 10 years and have just been diagnosed with Dercum”s. It seems to continually get worse. I’m 80 and suspect I’ve had it a very long time, but the pain from the lipomas began about a year and a half ago. I still need to find a doctor to help me deal with all this. I did have some pain relief using a pain gel or cream and rubbing in copaiba oil over it. I used it in the areas affected by fibro. Maybe it will help someone else a little.
I was diagnosed with ”fatty tumors” in my thighs and they do hurt a lot. Mine came on within 5 days when I bought a stepping exercise machine about 12 years ago. I thought I was getting a boil because it felt hot and painful but I didn’t see any redness and within a few days I could feel that hard lump. I just had 2 more come in the past week in one thigh and 3 in the other. It gives me sinking feeling in my stomach to see more have come because I know from experience they’re there for good.
I’ll be 41 in a week. I’ve had what multiple doctors have called a lipoma probably the size of a flattened golf ball on my chest (right below my right pectoral) as long as I can remember. Probably 15 years or more. Doctors said it wasn’t a concern. I now have countless lipomas in the “love handle” areas of my sides, on my hips, and outer thighs. These are extremely painful and sensitive to the touch. About 2 months ago my outer right thigh has been both numb and with a sunburn sensation (Meralgia Paresthetica?). The pain is spreading to the tendon area behind my right knee. When I exercise (spinning, some jogging) both my feet go numb and painful. Jogging used to be easy for me. I killed a half marathon in 1:51 3 years ago. For the past year and a half it feels like my legs no longer work.
Related or not, starting 3 years ago I’ve had debilitating bursitis in my right elbow. First flare up landed me in the hospital for a week because it was septic, though no bacteria ever grew on the streak plates. Soon after had surgery to remove the bursa. Just over a year later it flared up again. Kept having it drained and eventually surgery a second time. About two months after the second surgery it flared up again and had it drained multiple times and had cortisone injected. At this point I gave up on orthopedic and went to a Rheumatologist. Had multiple blood tests and an MRI of my elbow. No rheumatologic explanation. At this point my feet started experiencing numbness so I had a nerve study conducted on my legs. This study showed nerve issues were present. Had an MRI on my back which showed no pinched nerves.
We are now current, and I am now about two weeks out from seeing a neurosurgeon. Currently have no definitive answers on any of this. Just online speculation that I am doing my best to avoid.