Inflamed Lymph nodes in the right Groin versus ACNES

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Hi

I was assessed by a consultant four years ago with ACNES in my right groinal area. I was given a steroid injection and felt great relief from this.

However, 4 years on, I have CFS/ME and believe that the pain is inflamed lymph nodes (in that same area).

I have given in to medication and currently take 400mg Ibruprofen every morning and evening; 800mg in total.

Anyone have any thoughts on this ?

Much appreciated,

Jinny x

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  • Posted

    Hi jinny23,

    My ex has had ME for about 30 years,but it was only debilitating for the first few.

    My daughter has trigeminal neuralgia,so I've seen both conditions and learned a lot.

    Did you know that ME, PVFS and CFS are the same thing? Generally caused by the Epstein-Barr virus, which is a herpes family? This nasty little virus spreads easily, is often missed,stays in the body long-term,just like chickenpox, often infects fit people in their 20's and causes a lot of exhaustion,sweats,lymph node swellings,and pain.My ex had a lymph node in his neck removed as the surgeons thought he had hodgkins lymphoma.Turns out it was a bad bout of glandular fever-(Epstein Barr)and it dogged his life for the next 10 years.Pace yourself, add vits C, E and D to your diet and avoid further infections if you can.Things will improve.

    If you do have ACNES, then you need a nerve blocker such as Tegretol and/or Gabapentin,as conventional painkillers do nothing for nerve pain-not even morphine.These can be taken long-term and take a few weeks to work well,but are a lifesaver for those with acute or chronic nerve pain.

    hope this helps.X Beth

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    • Posted

      Hi Beth

      Thank you.

      I struggle to decide what vitamins to take... my hubby says I shouldn't be taking them but he struggles with taking tablets.

      I believe in trial and error !

      At the moment I take Echanacia, Zinc and lutein daily.

      I am always amazed how ME changes from day to day, week to week.

      I haven't had any flu symptoms but this weekend I did have; so odd. Aching joints.

      PMA is carrying me at the moment and very supportive family all round.

      Jinny 💝💝💝😍

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    • Posted

      Hi Jinny

      You're welcome :-)

      I admit to not liking taking any sort of tablets and have avoided most all my life, but if you eat well and include the vit D (2 of the one-a day over the counter from tesco),then it's surprising what health benefits you begin to see.Most people are really deficient in vit D ,especially dark skinned people and those who use a lot of sunblock or who don't go out much.You will begin noticing your nails and hair grow faster and are stronger.That cell renewal and repair will be going on in the rest of your body also.If you  eat cheese or other calcium-rich foods, then the combination protects well against osteosporosis too.(so an osteo consultant told my daughter.She has a condition that means she doesn't have periods because of oestrogen deficiency,and has been prescribed calcichew D3 to combat early osteosporosis).

      Zinc is good (1 a day) and a banana for potassium.

      Magnesium(1 a day) helps to heal nerve damage caused by de-myelination of nerve sheaths and damage from veins rubbing on exposed nerves(Trigeminal neuralgia).

      I wish I didn't know all this,but my daughter has been very unlucky healthwise, unlike me.The most med problems I've had in 60 years is an occasional migraine-and that was caused by dehydration.Lol.

      I'm glad your family is supportive.So many are not when faced with a medical problem without a definite diagnosis.

      Trial and error is good You know your body best.Only give any trial 3 weeks before you judge its efficacy.It sometimes takes that long.

      Aching joints is sometimes caused by the lymph nodes emptying -have they reduced in size after the pain you had?

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    • Posted

      Hi Beth,

      You have great experience to pass on. Thanks.

      The pain in my nodes seems to have subsided so have stopped taking Ibruprofen two days ago.

      I have also been worried about long term use of Ibruprofen....My therapist told me off this morning for not doing it gradually !

      I must admit I had 't thought of that tablet as needing gradual reduction... She explained it by saying that as an ME sufferer, you are much more more sensitive to things.

      I haven't felt the Lymph nodes so no idea if they are reduced; I 'm not even aware of their exact location!

      I just keeping praying that they will settle down.

      Today has been a good day!

      At therapy we talked about adrenalin and different body systems...like being back in school !

      My goal for this month is to keep fighting the need to go into overdrive by finding relaxing things to do; or do nothing , and try to plan out my week instead of writing a daily diary. I will try but I don't go anywhere so difficult to plan a week.

      Anyway, thank you for your responses. It's good to talk.

      Hope you are well.

      Jinny 😍🎈💝

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  • Posted

    Hi Jinny

    It's difficilt to write as if "one size fits all"-it doesn't. You know what works and what suits you.Trust your body and your instincts .I only know about these medical matters because those closest to me have experienced them,unfortunately.All I can say ,is whatever medicines you take,remember that as the body can get used to them in time,then the body needs time to get used to being without them,ie; reduce any gradually. Lymph glands are found thoughout the body,including the head and neck.The lymphatic sysyem is not greatly understood by GP's .Neither is the endocrine system.This is a great barrier and disservice to many people,as these 2 systems control a lot of functions in the body-and womens bodies in particular are affected by them to a greater extent than mens .The adrenal glands play a great part in the endocrine system,as does the thyroid gland.All are governed by the pituitary and hypothalamus glands ,which are the body's "computer system".They play a much greater role than most doctors understand.Boost your immune system any way you can-regardless of what your husband or anyone else suggests-they are not living with your illness.Avoid unneccessary infection by either wearing gloves or washing your hands often if you encounter unhygenic conditions.Drink lots+lots of liquids and get plenty of rest and sleep.It's hard to rein yourself in if you've been a very active individual,but you're ill and your body needs time to get better.Try not to get too despondent-you will get better,if you have ME/CFS/PVFS.Above all, don't accept that because this illness gets you down,that you have a psychological problem.Remember which came first.

    X Beth

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  • Posted

    Hi All,

    I am diagnosed with CFS/ME for four years.

    Had a bad past week and awful problems with my saliva area lymph nodes.

    On visiting my gp (very good gp throughout my four years plus) who told me the saliva glands issues are unlikely to do with ME, unlike other areas of lymph nodes.

    Eek, a first to me as these glands (others also play up) and as they have been increasing worsened I am concerned.

    Sorry, droning on now....

    Please can others on here diagnosed CFS/ME tell me if they have saliva, under chin and jaw issues?

    Have you been told not lymph node area connected to CFS/ME?

    Appreciate replies please x

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    • Posted

      hi Inot. sry to hear ur having these difficulties - most unplesant. to answer ur question, yes, i've had these 'under the chin' lymph swellings - usually comes when i over do it or have bin stressed out with something. i had understood that my deminished immune response was the cause. they tend to respond to extra rest and i use my own concoctions (which i'm most probably not allowed to mention on here). also i've got TMJ problems. sometimes it's difficult to open my mouth. i have to work at it. this came on with ME/CFS.

      hope u feel better with some rest.

      Caitlin

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    • Posted

      Hi Caitlin; I, too, have the terrible TMJ, but have been told by Specialist that this is due to my Fibro...holly molllly....this is now opening up all new areas...am now thinking, what   is Fibro or ME at moment.....my nerve issues as talked about above by jinny  and myself ealier in discussion....and all adds up, and I especilly noted the Epstein Barr Virus...as I have always believed that ME is a result of this virus...and I KNOW I have not only had a Bad case of same, but been exposed Many times to same....but also believed that Fibro was related to Muscles/tendons and Nerves.  and Yes have found that since having my Mouth Brace, that I am now having extra Saliva,  (but not related to Lymph Nodes enlargement).......and can relate to  what Beth was saying re the Myelin Sheath   etc,....my entraped nerves are in back/loin...and yes do find that the Gabapentin  helps the nerves there.....I first started

      out with Osteo...and everything else seemed to Progress from there, as I originally assumed that I was trying to push myself and continued working as an RN in a very busy department......sooooo many things become involved...and find that I  am treating each as it comes....redface  Bron

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    • Posted

      hi bronwyn. i haven't been following this thread too closely, so not up to speed with all that's been discussed. sry to hear that u've got the TMJ problem on top of all the other 'delights' of ME/CFS. i often think that this is one of the most unforgiving conditions there is?

      i consider that the TMJ to be part of the FM. apparently circa 50% of ppl with ME/CFS also have FM or/and v. v. i just manage it by exercising my jaw muscles till i can eat properly. whilst it's not that painful for me, it's rather inconvenient & annonying.

      yes, i feel many ppl with ME/CFS get worse coz they force themselves well beyond their resources/reserves, sometimes causing irreparable damage. the work ethic, often accompanied by an over zealous sense of responsibility seems indelibly hard wired in many with ME/CFS.

      Caitlin

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    • Posted

      Thanks Caitlin;   my Actual problem with my TMJ now, is Not so much the joint, but the Facial Muscles (those over the cheeks), which become Very painful when I talk.....the Specialist has told me to Wear it All the time, so that I Can't talk....but if you knew me....that's TOO big an Ask....I just cannot Not talk to people....I Try and wear my Brace when here on my own...but to even try to talk on the phone (to hubby/kids) and when someone visits etc....I have to !!!.....and to go to the shops (like yesterday, to have lunch with one of my daughters, and then spent another half hour doing a couple of jobs....and today my son camt to spend the day with me....hence Very sore again.....redface    Bron
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    • Posted

      hi bron. that sounds awful. u remain v. cheerful/positive despite this painful condition. does keeping the brace in place just minimise the pain by keeping u from talking or does it have a longer term remedial effect?

      Caitlin

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    • Posted

      Morning Caitlin;    I'm not too sure re the longer term effect.....at present the Specialist tells me it's  "to support the Upper Jaw and the facial muscles", and by stopping me from using the facial muscles, it then stops the pain from coming....it does help, so long as I don't do any talking/chewing....which I can't do with the brace in....but I think He should have Wired it into my head...as I am "a talker"....much to my own Detriment....I am hoping that it is like all our other "spots", that it will only stay for a few months, give me a  break, and will probably come back again....that's what I Am hoping anyway....only time will tell??? hahacheesygrin
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    • Posted

      yes, i get that. so it sounds that the application of ''rest'' to the facial muscles will help recover or sustain some energy locally??? is ur ''specialist'' a neuro or immmunologist?

      it's amazing the variety of muscles this condition affects. hopefully it will help. but u have to eat & communication is so therapeutic, that it's absence would have equally 'detremental', effects albeit different ones. btw, does weather changes such as ''pressure'' affect u? or do u have sunshine 24/7/365 in ur neck of the woods?

      Caitlin

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    • Posted

      No, this Specialist is a "Facial reconstruction and Maxo-cillary Surgeon"...as for the weather changes...Yes, I find that the Heat affects my Fibro   last November confirmed this immensely...it was Very hot and Humid, and my muscles "were actually screaming in Pain" is the way I described it....I first noticed how the heat affected me was in the very beginning, and it was Winter, and had taken Mum to the Train and hadn't put socks on, hence when I got back into car, directed the car-heater onto my feet to thaw  them out...but turned it off ASAP, as it Really started the Burning Sensation....another time was after my first MRI and thought a "nice hot bath" would relax me....not so....I had to, also, get straight out, as it sent off the "burning Pain" too.....this is why they first thought I had MS, as the Neurologist said that  HEAT EXACERBATION  is also a sign of MS...the colder months exacerbate the Stiffness in my joints/muscles....these we all know the problems of......hope you are doing ok today.............wink (I love these faces, since I have been introduced to them...they can express exactly how we feel).....Bron
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    • Posted

      yes, i love these emojis. they are so varied & expressive that they could act as a stand alone pictorial/visual language? unfortunately my browser won't download them for me - it's well overdue an upgrade?

      it's reassuring to know u have THE expert on facial matters on the TMJ etc. challenges. i can resonate with ur response to humidity. it's mostly the change in the weather ''pressure'' that my body reacts to. in low pressure and humidity & i can hardly breathe. at the moment we have just that. there's rain overhead presently, so no relief till the heavens empty their buckets lol? the coming week we're forecasted a ''heatwave''. i look forward to cooler weather & high pressure.

      Caitlin

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    • Posted

      So Okay Caitlin.....here comes another...enjoy it, and sleep well with the smile that I am sending you from "the other side".....Australia...biggrin...Bron
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