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
i'm wondering if the anti-inflammatories are helping jinny?
Hi Caitlin
They tablets take the pain away but there is always a nagging feeling there througout the day!
I don't like taking the tablets but I'm advised that at the moment, it's more important to remove the pain so less energy used with my CFS/ME.
Long term, I feel it should be investigated but I have not been advised one way or the other.
It seems that we are unable to identify the root cause of many symptoms and conditions so, it may well be that I have to accept where I am at and just get on with life as it is.....
My gut instinct tells me I have to live with it.
THanks for your response.
Jinny x
Hi Jinny,
I am diagnosed CFS/ME four years ago, fluctuating moderate to severe.
I suffer painful and non painful (different areas)lymph nodes everyday. Drives me crazy and is a worrying factor.
Had lots of tests, scans and although inflammed lymph nodes show no solution has been found.
If anti inflamatories help it would suggest infection but as you say CFS/ME deems us just putting up with. Have you had ESR bloods? Regular blood tests definately a good idea.
Sorry I can't write you a solution.
hi Jinny . as u say they are focusing on moderating the pain to minimise it's effect on ur ME/CFS. it's always difficult with ME/CFS to seperate out what's causing what, as all, or most systems, seem to become involved with ppl with ME/CFS.
have the medics considered that it might be the return of, or the exacerbation of the ACNES?
btw, was there a connection, that u know of, between commencing the steroid treatment and the onset of ME/CFS?
re: the ibruprofen: guess it's a case of ''needs must'' as the stress of the pain on the body may cause an ME/CFS relapse/deterioration. usually they co-administer antacids with NSAIDS (breuprofen) coz of its gastro-irritant effects. anti-acids, however whilst doing soem good also have their downside? perhaps a short term course would be a possible appraoch or alternate with paracetamol??? sorry to hear u have to deal with this on top of the ME/CFS life eh?
Hi Caitlin,
I appreciate your response; very kind.
I have never really linked the two perhaps because at the time, it was more about trial and error. No one seemed to get to the bottom of my health problems, being thrown from pillar to post.
When I eventually received a written assessment from the Neuro Consultant, it suggested I had MS ! As you can imagine, I was devastated. Two years on and little support, I knew I had to get into research mode.
Finally, I visited a private specialist who suggested my consultant had got it wrong because I presented with atypical symptoms as well as no test results pointing to MS. He went on to suggest That my fatigue pointed to CFS.
Last year I met up with Another consultant who assured me it was ME not MS.
Since then I have had support from a clinic and am using my common sense.
I did wonder if I should try Paracetamol rather than Ibruprofen ??
I think what is frustrating is not having answers to my questions.
If there is infection, should I not have antibiotics ?
Should I carry on with this pain and tenderness long term ?
What effect is it having on me ?
I just feel I want someone in the medical world to give me the right advice....instead of leaving it until it is too late!! If you get what I mean. ??
Ah...I am rambling now...so time to stop bending your ear...apologies from me 😡
...and thank you again. It's a real tonic to hear positive comments from those who care enough to reply on this site.
Best wishes
Jinny💝💝💝
Hi Inot and thank you for sharing 😍
It is comforting to share with someone is experiencing the same as myself. I have been about 3 years into this way of living after 30 years in teaching. I loved every day of my working life and looked forward to every day. It's Ironic how fortunate I have been in my life, health wise for many years as reflecting on this has given me the strength and passion to face my challenges now, take control yet with respect for the condition.
I won't give in but I do have to find strategies that take me out of overdrive. My brain works at full speed all of the time when I am in an 8 or 9 but still my body won't keep up!!!
Whilst I feel like I am on a roller coaster ride, like a reel to reel tape winding around and
around at increasing speed before the stop button is pressed, I also acknowledge the facts around CFS/ME.I am also comforted by the fact that you have already had scans and they found inflamed lymph nodes but no solution found. I wish they had found a solution for you, as I am sure, you do too.
Sometimes when we are anxious, we just want to get all the tests done that are available to us and as quickly as possible...but that is not always the right way to move forward for many reasons.
ESR bloods ?? I will have to look that up!!
You have to remain so strong to advocate for yourself, don't you think ?
My doctor is very good. He seems to go with whatever i suggest. He calls me a very positive lady !! He makes me smile.😍😍💝💝
Love to hear how you are doing .... I have some great strategies that I use but you know how it is,....not everything suits everyone !😡
If I can answer any of your questions, Please feel free to ask. Thank you for your kind words.
Jinny
Hi Jinny,
Thanks for your reply. Sounds like we are similar in many ways. I too had always worked (achiever..enjoyed the challenge, worked hard), long term very healthy, until all this 😐.
Like you I am very lucky to have a good and supportive gp. He doesn't neglect me on the basis of my diagnosis and always checks things out thoroughly (down side is so many medical appts.).
ESR, Full blood counts and hormone tests should just be for starters and if don't already always keep a cooy of results yourself to monitor results. Often surgeries only pick up major stuff not general changes which can be just as important.
I have some other entwined diagnosis, more checked the more can be found...there is almost a chuckle in that.
I have self trained my pacing and strategies and although haven't taken it away, sometimes helps a bit.
For me acceptance was a major turning point, then I coped in a less sad way (hope that makes sense).
As you said, sharing and supoorting fellow sufferers is excellent.
Chat anytime x
Hi
Just settling down for the evening, almost ready for bed!
I think you are right...it's good to meet like minded people 😊
Yes, key to survival is acceptance, determination and Understanding, meaning arming yourself with knowledge. I am not so sad these days too.
Crying can be good for you but daily crying and feeling sorry for yourself is just not the way forward. I always think of my husband, my two children and my very supportive family and it lifts me up and puts everything back in perspective.
Love to chat,
Speak soon
Jinny xx💝💝💝
hi Jinny. lovely to hear back from u. gosh u have been tru a lot in the past 3 yrs. know that old chestnut of being passed around like a 'royal post' parcel from dept. to dept., and without a definitive diagnosis @ the end of it all. part of the diagnostic problem with ME/CFS is, that it's symptoms can mimic those of so many other conditions, especially neuro & autoimmune conditions. in the absence of specific bio-markers the medics seem to be slow or hesitant in giving a definitive diagnosis.
how insensitive & irresponsible of that consultant to tell u by post that ur symptoms pointed to MS?? thank heavens ur a positive & practical person.
re: the swoolen glands. that seems fairly typical of ME/CFS. if the inflammation is the result of infection, it's difficult to know whether it's of a bacterial or viral origin. think GP's tend to assume many ME/CFS infections tend to be viral. therefore, they don't prescribe antibiotics. with the history of over prescribing antibiotics, presently, there's seems to be a culture of not prescribing antibiotics unless one's sure it's a bacterial infection that requires intervention.
do u know the results of ur white blood cell count and if any were raised do u know which one's?
Caitlin
Hi Jinny; I hope I'm on the right track here.....are you saying that you have "inflammed glands, or acne, in your R) Groin"? If so, re the acne, this can be caused by many factors, including wearing too tight undergarments, increased perspiration, too much swimming in salty water....the list goes on, and is quite common. Due to the "environment" of this area, bacteria can be more increased on the body's surface, resulting in infected pores.....and yes, the cortisone injections would have treated the infection....if I am on the right path, try reading up on appropriate treatments, remembering this area is more sensitive to other skin areas, so needs "natural" treatments....hoping this is what you are looking for? Bron
Hi Bronwen
Not sure what is going on really !!!
I'm always looking for ways to move forward.
I can cope with the fatigue because that's a state of mind..you HAVE to deal with or else it takes control of you. 😍
I just can't handle the pain in my right lower abdomen.Originally I thought it was the cyst I had on my right ovary; they removed my cyst, the ovary and one of my tubes. however, the pain is back. whilst searching for answers, I was sent to several specialist in different in an effort to find a cause. A certain Mr Grimes, my saviour at the time, said it was ACNES: Acute cutaneous nerve entrapment syndrome and treated me accordingly with a steroid injection. The pain went and I was so grateful.
After some time I did not improve. The next specialist said it was MS.....ah. I was devastated. Two years later, I just had this gut instinct; something was not right. The last of the specialists stated it was a miss diagnosis....😡
He thought I had ME not MS.
In recent months, my therapist has suggested that ME does bring tender and painful Lymph nodes and in the groin area. So, as you can deduce, I took that at face value and assumed that the pain was not ACNES after all
When you talk to some people in this site....particularly those who are knowledgable, you start to question things again.
For now, I am going to carry on with the Ibruprofen as it is a decision I made with therapist jointly and I don't want make changes without her acknowledgement.
Thank you Bronwen for your thoughtful contribution. It's good to talk
Best wishes,
Jinny
Hi Caitlin,
Sorry for the delay in replying....had a few bad days ! Just switched off !
I have never asked for my blood results on hard copy and have never been asked if I wanted them either.
I shall follow that up with my GP.
I was looking at ways of upping my white blood cell count, naturally. I did come across Zinc and Folic Acid.. !!!
I'm doing exercises from the physio... as left leg pain caused by stiff lower back vertebrae and am succeeding re progress. I read an American Medical Article the other day regarding ACNES and it was interesting. The medic suggested exercise for the pain instead of medication so have emailed the guy for some ideas. I await his reply if he ever does ??
Hope you are well Caitlin
Have a good weekend
Jinny 😍💝
hi jinny. nice to hear from u. no worries re response time frame. hope ur feeling recharged after the rest. hope too, the pain is kept to minimum levels, whether by analgesia or/and by the physio.
thank u for asking, i'm ok. to-day has been a 'pay back' day. did too much yesterday.
yes, it's a good idea to ask for & keep a hard copy of blood tests etc. as someone else has already pointed out, generally speaking, GP's & receptionists just look for the 'action/no action' comments on the lab result forms. levels may have dropped from the upper normal to the lower normal levels in a short period of time. this would be relevant to health status and as a diagnostic indicator. thet may charge u something nominal for the service, but it's worth it. it's good to have objective markers of progress or the lack thereof.
jinny, do u know if there's any definitive test, blood or otherwise, that conclusively diagnose ACNES? or is the diagnosis done exclusively on clinical examination/history & inflammatory markers such as ESR levels? it'll be interesting to hear what the ACNES expert will have to say? do let us know.
there's a plethora of immune protection/booster products out there on the market. different ones seem to help different ppl. unfortunately, it's usually a 'trial/error/expermintation' process to find what works for each individual. and we only know that in retrospect.
zinc & vitamin c work well together to help heal the body. i'd be a little careful, however, re the folic acid supplementation in the absence of knowing ur Folate levels. the problem being, that high levels of folic acid can mask low levels of b12 in the presence of neurological symptoms. have a look @ the 'health unlocked' web site in the PAS (pernicous anaemia section) to see how low levels of b12 affect us. many ppl with ME/CFS have low levels of b12 (as well as vitamin d & thyroid abnomalies i.e the auto-immune type disorders.
keep positive
connect again.
Caitlin.
Thanks Jinny; Now I understand what/where you are coming from.....I too have "trapped nerves", and yes they cause me a lot of pain too. Mine are in my back/loin area......this is the reason, mainly, why I take the Gabapentin, as a Nerve Blocker....I do find it is worse in winter (from wearing slacks/jeans etc and rubbing on the affected nerve areas), and when I do too much walking....seems to aggravate the situation....does this connect with what you are feeling?............Bron
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
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 💝💝💝😍
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?
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 😍🎈💝
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