Help - such pain - has anyone else ex... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Help - such pain - has anyone else experienced this.

RebeccaP profile image

As I am still a relatively new patient I am hoping that someone out there may have experienced what I am feeling - could have run a marathon on Friday then from Friday Night went completely downhill - feel my body is totally under attack if that makes sense - up since 4a.m. this morning with pressure on head, buzzing sound in my brain - and the sound ov voices like a radio in the background, that I was used to - but what I have not experienced before is the severe pain I appear to have all over my body - at different times different parts of mean feels as if it is under attack between burning sensation on the skin and severe pain in the muscles - one minute in my arm then my head and and the same time some spot in my leg or face, feel I dont know reallly as I have never had this before - does this happen with APS - is this how it is going to be -

10 Replies

Hi there

Sorry to hear that you are in so much pain I used to have pain that jumped all over my body my advice to you is get a appointment with your doctor tomorrow and tell him all your symptoms good luck babe x

MaryF profile image
MaryFAdministrator

Hi there, sorry things are currently so rough, firstly do you just have the APS or anything else, another condition, as some people also have a lot of pain with Lupus and fibro type conditions alongside the APS. Personally I find that if I am reacting to any form of virus, (lots around currently), that this makes all my symptoms far worse including not being able to sleep. I hope you specialist/GP can urgently check things out for you, and also make sure that your level of medication is ok for you. Hoping you have a better day today. Mary F x

Sorry about your pain. I too have experienced this before, to the point where I was totally and completely fatigued with pain in joints, lower back, etc. along with skin sensitivity.

What I understand is that when this happens, it means you are experiencing an autoimmune flare, wherein the systems and mechanisms of inflammation are in overdrive.

I personally do not attribute such flares to specific diagnosed diseases (APS, fibromyalgia, chronic fatigure, lupus, etc.) I used to do this, but not anymore. These days, I see such diseases simply as SYMPTOMS of a larger underlying issue, which is immune disregulation (inflammation), which itself has its own etiology.

If you treat such flares as specific diseases, and use medication, you may indeed feel better. But that does not mean the problem is gone. In fact, you run the risk of continuing to develop other autoimmune conditions (they tend to cluster together) because you never addressed the underlying issue.

One of the fastest growing areas of research in autoimmunity is the link between autoimmune disease and intestinal permeabilty (leaky gut). Once your gut is leaky, and once substances that should remain in the intestine start making their way into the blood stream, your body begins mounting immune responses. The result can be full blown autoimmune disease(s).

My doctor has advised me to heal my gut through diet, ensure that I have sufficient levels of vitamins, mineral and antioxidants in my body, get rock solid sleep and keep stress levels down.

In many cases, such an approach can prevent the flare in first place. You may never fully be off meds, but your life will hopefully be much more enjoyable. I know mine is. In the best case, you might be able to drive diagnosed disease (i.e. anti-bodies present) into remission (i.e. anti-bodies undetectable).

Anyway, good luck. I hope you can dowse the fire of inflammation and start to feel better.

kathyD64 profile image
kathyD64 in reply to TheKid

so well written i too believe exactly what you are saying - the symptoms we get often get dismissed because we dont all have secondary aps and doctors need to give us another condition like fibro cfs or depression to fit... but until the complexity of this condition is fully understood i agree the importance is to get to the route of the cause eg hormonal endocrine imbalance that could be treated or recognition of another auto immune condition look first and exclude the logical answers before delving deep into conditions that then dont get taken seriously - they then say you are depressed or your fibro is worse! hmm very sceptical primary aps who has lived with the diagnosis for near on 30 yrs.;-)

Rebecca just a thought what is your inr doing currently? you could be under your target or your target just is not high enough - i agree seek medical help hun hope you feel better soon kathy xxx

MaryF profile image
MaryFAdministrator in reply to TheKid

Yes good advice re the inflammation and this book, is a very good read in terms of the gut, lots of snipped useful for all autoimmune conditions, which is why I read it, regardless of the list of diagnosis is primarily for. The information around proboiotics and healing a sore stomach I found invaluable:

Gut and Psychology Syndrome: Natural Treatment for Autism,ADD/ADHD,Dyslexia,Dyspraxia,Depression,Schizophrenia [Paperback]

Dr. Natasha Campbell-McBride MD. MMedSci(Neurology). MMedSci(Nutrition)

available for not too many pennies via amazon 2nd hand books, my favourite supplier beyond local library!

Mary F

Hi

I used to have this burning sensation at the bottom of my index finger on my left hand and at the top of my right leg close to the groin, the consultant put me on Plaquenil and the pain/sensation went the one in my leg has started to come back a bit now but not all the time as before we are just waiting on my retinopathy results as to whether or not we can increase the dose of Plaquenil as it obviously was/is helping

What you are describing could be a form of migraine in your head with tinnitus and the other symptoms in your body a flare of the autonomic system. When that goes into a hyper arousal state it can cause the burning and pain which you feel is coming from your muscles or tendons. In fact its centrally processed. You may also find you are more sensitive to smell, noise, light and this is worse if your sleep has been badly disturbed (during these last hot few nights).

If it has not settled down I would check with your GP but in the meantime you need to rest, don't push yourself whilst you are in flare, take appropriate pain medication, see your GP if these continue to discuss more centrally acting meds like Pregabalin if that is appropriate although Plaquenil if you are very fatigued as well as the joint pains is a good suggestion. If the migraines are a real issue and continue, you may want to ask your doctor about another anti epileptic called Topiramate which will act well for the migraine and can help with the body pain too.

You don't say if you are on warfarin, but the simplest issue would be to make sure your INR is in the appropriate range, especially if you are having migraines.

Flares are miserable but as the Kid says, diet can help, Ive gone on a wheat and gluten free diet which has helped a lot. Sleep too is really really important so if you are having problems see your GP about getting some help because it will fire up the circle if you don't get it under control. Flares are just that, they don't last too long, so as bad as it may be feeling remember it will stop soon and hang on in there till then. We are all here for support if you need us till then Rebecca. x

Thank you all so much, it makes it easier when people understand what this is all about - what I am taking from this is that this is a flare up - as bad last night and during the night as it has been since friday - but I am not as frightened now, and also I know I am not imagining it. My INR is 2.3 and has been stable at that for the past 4 tests which my Neurologist seems to be happy with - a few years ago when I was diagnosed with astio. artrith. I was given Plaquenel to take but decided not to go ahead with it and when down the natural remidy route which until now worked well but since I have been diagnosed with APS - things have changed so much. Am seeing my Rumy - tomorrow and will go through this flare up with him and I suppose its time to go on the medication anything would be better than this. Thank you all so much for your messages - its very hard to exlain these symptoms to people who do not understand - but I take great assurance from all your responses and know I am not imagining all of this - hopefully tomorrow will sort it out.

Rebecca

Good luck for tomorrow i might be starting plaquenil soon too - ive exhausted my normal coping mechanism and i have heard good results from it. ;-) kx

thank you so much will keep u posted.

Rebecca

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