??? Fibromyalgia

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Hi. I posted here before but I've been getting ruled out for other issues. Long story but for years I have had aches and pains muscle and joint etc. and it seems each day it's a new pain. So past two months I had lung issue then two UTI and then what theybare calling an allergic immune response to something. Anyhow I was worked up for numerous issues and every test I had was negative. So what I am left with are some symptoms. So I am curious if it's fibro. Going back a few years ago I had unexplained lymph nodes large with left foot swelling and all tests negative then. No one knew why my foot was swollen. I had other symptoms and saw a rheumatologist who said minor fibro probably but everything was poo pooed and on I went. I've dealt with the pains etc. I push though my day no matter what with family and busy kids etc. so my questions are would fibro cause this enlarged nodes years ago and currently I have fog, dizziness. Feel faint at times. My biggest complaint is my skin feels like it's burning. It's making me crazy. I even was worked up for another UTI or my OB checked for infection too bc both were negative but I have this awful burning. My skin just hurts. And I have awful aches and pains. How severe can fibro pain be? I am just getting back to work and last week I was so busy I could have cried the pain was excruciating. I also have awful plantar fasciitis in one foot. It's awful to walk. It just hurts. And I need to exercise but it hurts. Sometimes I feel like I am walking in sand and getting no where fast. I am gonna check to see a rheumatologist but I believe the one in my area is not that great so I have to investigate. Any comments are appreciated. Thanks.

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  • Posted

    Hi Lisa.

    I am sorry your going through so much pain,i was diagnosed 3yrs ago an like yourself i also feel like my skin is on fire,there are days when i can hardly walk but i also get fibro fog an diziness ,the only time i rest is when i take my medication,they iron me so well that i do not know what i would do with out them,Are you on any medication? I also have 2 lymph nodes which i noticed a few months ago,Doctor not to worried as he says they are mobile an i should not be worried but you are the 1st person who has mentioned Lymphnodes.Go an see your Gp try get some medication to help ,Try not to over do it ,easier said than done,good luckĀ 

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    • Posted

      I am not on medication.  I haven't seen anyone about this.  Since every test I have had has been negative they say you are healthy bye bye.  I was just curious if anyone heard of nodes swelling because when it happened I was tested then for literally everything and all was negative including a PET scan.  and I wasn't sure if that episode was linked to what is going on now.  My skin feels awful, I can't stand the burning, it feels like when you twist your skin in two differnent directions that burn you feel and it is constant omg it is driving me.  My butt burns when I sit, my feet burn when I walk I move around it follows.  It is making me crazy!

       

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  • Posted

    Hello Lisa,

    It has been just over a year since I started experiencing most of the things you are describing aside from the swelling. I got my diagnosis quite quickly (4 months). I was diagnosed with severe fibromyalgia by a Rheumatologist after extensive testing. I thought my knees where swollen as my legs became so stiff and I had horrible pain behind the knees, but ultrasounds showed there was no actualy inflammation. It was described as 'perceived swelling'. You may know that fibromyalgia is not believed to cause inflammation nor is it considered an auto immune disease. Somewhere along the line I noticed large swollen lymph nodes in my neck (biggest measuring 3cm- but only in one direction (if it is bean shaped it is fine, wheras a sphere or circle with the same dimension in every direction is worrisome).I had several ultrasounds to monitor my lymph nodes and they were ruled as benign without biopsy. I can see fibro causing most of your issues, but not the leg swelling- if it was truely swollen with evidence of inflammation. There are many conditions which overlap with fibro including auto immune conditions, so I would keep following up with your doctor. I would make sure thyroid, and ANA (anti nuclear bodies- this checks for autoimmune conditions such as lupus) are checked along with inflammatory markers. 

    Good luck.

    -Mat

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    • Posted

      My leg was swollen because the lymph nodes in my groin were enlarged.  Actually it was my foot that was swollen with edema.  I had every test done including a PET scan for cancer all were negative they had no idea why the nodes were enlarged.  That was 3 years ago.  I wasn't sure if that was linked to what is currently going on.  My thyroid is perfect and my ANA was slightly elevated so I had a double stranded DNA for lupus and that was negative.  i literally had 3 CT scans this month, numerous 24 hour urines done, tested for every known tumor that releases a hormone, cushing disease, allergy markers, everything was negative.  It has been crazy.  Something is going on and the burning is what is driving me nuts now.  Everything burns, my butt when I sit, my feel when I am walking everything.  

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    • Posted

      The swollen nodes are common with Chronic Fatigue Syndrome (CFS) but some also believe it occurs with fibro. I certainly do. Some people have both Fibro and CFS. The burning can be related to the nerve issues in fibro. I have it also, along with pins and needles and itching. I get very sensitive to hot and cold- I tried epsom/baking soda baths but the heat was too much. 

      I have been seeing a traditional Chinese doctor who is trying to treat me naturally with chinese herbs. He believes that my kidney and liver are weak but it doesn't show up on tests. Along with that I have radically changed my diet. No beef, no coffee, no salad or fruit, no cold water, no snacks or sugar. Only cooked vegetables, pork and lamb, hot water, hot soups, hot rice and hot noodles. A lot of people with fibro have issues with Yeast (Candida) which is why cutting out sugar is important. Sometimes I feel better and then it all just comes back. This is not an easy thing to deal with. I have been researching and found that AHCC may be an effective supplement for fibromyalgia. It boosts your immune system so I imagine it would be effective for those with fibro who have underlying and undetectable infections. I will be trying this soon. 

      -Mat

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    • Posted

      Hi Mat

      Thanks for the Info,i do not always get the chance to get on here often,My GP actually came to my home as i am also Agoraphobic ,he felt my neck ,at this time i only had one that i could feel,he said because it was mobile an not causing me any problems not to worry,I now have two both feel like marbles size,they do move ,but till i read this tonight i had no idea that these are to do with my Fibro,So thanks for sharing.

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  • Posted

    Ji lisa99975 , I have had fibromyalgia for 16 years and it took a fewxtrial and error of medication to get the right meditation for mecascwe arecall different and symptoms vary from person to person although the basic pain areas are the same just different severity, my medication has gone up over the years as our bodys become immune to them ,

    What you describe is common and the feet swelling although mineconly dtarted doing tgat last year but even the thought of having to stand was reducing mevto tears, I have a good gp who understands and deals with my medication, I have previously been to rheumatologist and pain management clinics and tryed alternative therapies which just left a big whole in my bank account,

    I take regular meds as well as antidepressants as fibro causes a lot of people to become depressed duecto having to cope with the day to day pain , sleep deprivation, brain fog, restless legs , ibs to name a few,

    I would definitely recommend that you check with your gp again as you can not go on with this without help , you may not need a lot of medication alotvof people who have fibro get on with amyatriptalin or gabapentin in the beginning try speekong to your gp he may refer you to rheumatologist again or a pain clinic but don't just suffer in silence

    Thereis a lot of help out there and different types of medication that can help you.

    Good luck sorry for such a long post

    Loraine x

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  • Posted

    Hi Lisa. Yes dear it certainly sounds like you have FM. You have received some really good advice here. I would get to a Rheumatologist. He will be able to diagnose you correctly. It is manageable however Lisa and you can get some real relief. Stress is a real factor with FM so getting help with managing your stress and worry could be of real benefit as well. I feel for you sweetie! You are not alone. Maggie xx
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    • Posted

      Address your fears sweetie and challenge your negative thinking, one at a time just as you would encourage a beloved friend. The line down the page method always helped me. Draw a line down the middle of a page making 2 columns. Write down your worry or negative thought on the left and then challenge that thought truthfully as you would someone you love. Write your truthful argument on the right column. Like for instance, 'I am such a loser! I seem to get everything wrong.' That is your automatic critic in your head. So write it down and now, challenge that thought. For instance, 'I am not always a loser. I have gotten many things right in my life'. Then list some of your achievements. We often have 'all or nothing' thinking which is absolutely irrational and untrue. So reasoning with ourselves as we would our children, who would think similar thoughts. But it must be a truthful response and not forced. It is amazing how, after we reason on our negative thoughts, we can see how irrational and ridiculous our thinking can be. It is a very effective and simple exercise. It works. It helps us get things into a proper perspective. Take care of yourself Lisa. There is much more that you can do to help yourself and you are worth it! xx

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  • Posted

    Hiya Lisa, really feeling for you, so sorry to hear of your years of suffering without a proper diagnosis, I haven't read any of the comments yet, but I'd be surprised if some haven't said..yes, it sounds like Fibro..there are sooooo many differing symptoms and we don't all get the same..grr, it usually takes years of pain and suffering etc, before one is diagnosed mine was 10 years others are shorter or longer, The only doctor that can really help diagnose is a Rhumotologist, however once you have a diagnosis it is vital to have a good GP, one who has knowledge of thus autoimmune condition and others that we often have along with it, so it's a good idea to ask/research, ect. Onc I as diagnosed I went to a reputable website and printed out lots of things, just in case my GP wasn't up with it, he was so I was blessed , you will really need a very supportive family and friends around you, no doubt you already know why..some of them just don't get it, so we do require positive, supportive people around us and if their not, we just have to cut them off for a while until they get it, it's halthy boundaries, they might feel sad but YOUR NOT BAD..whatever you do if this is Fibro, try really hard not to stress, as Fibro loves it and makes hired symotoms come on us with a vengeance.Hooe you get sorted really soon, be encouraged Lisa, you are n never alone..we are all here for eachother..no matter what the time of day or night it is, we are all over the world, so we are basically here 24/7, be blessed Lisa, have a lovely day, I'm in Oz💐😘🙏

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  • Posted

    Hey Lisa. I feel your pain. My lymph nodes swell constantly. I'm actually scheduled to get another ultra sound. Doctor said it ciuld be from a former illness or my fibro. I had epstein bar, mono or glandular fever (whatever you want to call it) years ago and it lays dormant in my body but sometimes while trying to fight off another illness it reactivated. The chronic fatigue and nodes swell. My pain greatly increases. It then sets me into a fibro flare. Ibs, tmj, migraines, fog, muscle spasms, skin sensitivity, incontinence, tingling in hands and feet, severe muscle and joint pain etc. As hard as it is to function during these periods I have to take care of myself or I just go down a rabbit hole. I know you don't have a good rheumatologist near you but I would find one to get help.

    Recently, I thought I had plantar fascitis but turned out to be a fibroma. A non malignant tumor in the arch of my left foot. The pain was unbearable. By overcompensating, my other foot has developed an enlarged nerve between my toes. I am having great difficulty walking. So I know the pain you are in. There are exercises, splints, insoles, socks and shoes you can get to help with the fascitis. I was doing that before I got a proper diagnosis. Wish you well and hope you get answers soon.

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    • Posted

      Ok another question. I know with fibro your nerves are like over active or sensitive etc. now when I sit down my buttocks hurt so bad. There's no sores or red or anything. It's just they are sore and sometimes feel numb almost like super sensitive. Anything g to do with fibro?

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    • Posted

      Yes. I can't sit for long periods of time. I regret getting a new car that doesn't have heated seats. My back and but hurt when driving for more than 20-30 min. I had sprained my lower back more than once and doc thinks that along with my stress is what caused my fibro to start. So when I get out of my car and try to sit down , it hurts so bad. Have to either stretch or lay on my side. When flying I have to take a muscle relaxer.

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    • Posted

      It's awful cause once it stars it doesn't let up until the next day when I sleep. I feel better when I wake up. I mean I have enough padding. I feel it's a nerve type pain. I constantly check cause I feel like I have a sore or something but no marks nothing. Thanks.

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