1. Community
  2. Bones, joints and muscles
  3. Fibromyalgia Syndrome

Fibromyalgia and Epilepsy

Posted , 4 users are following.

bluesman
bluesman

I have had Fibro for years but only diagnosed in 2014. I've had good pain relief from magnesium, amatrptyline and 5htp. My daughter who is only 15 has recently been diagnosed with Fibro. She also suffers from epilepsy which is largely controlled by surgery and medication. Is there anyone here with Epilepsy and Fibro? My daughter is on Tegretol and Gabapentin but is suffering terrible pain and migranes. Can anyone offer any advice?

3 likes, 9 replies

9 Replies

  • bronwyn97278
    bronwyn97278 bluesman

    Posted

    Morning bluesman; no, thankfully I don't have to suffer Epilepsy as well....your daughter really has a load to bear, and for this I am trully sorry, as I feel teenagers have enough to deal with.  My only suggestions would be is to keep her constantly monitored by her Neurologist (and a Rhuematologist for pain controll)..the Neurontin (Gabapentin) is a start, and they may want in increase it (if not a too high dose already)...  are the migraines related to the Fibro or the Epilepsy?   this is a very hard call, and I really feel her Neurologist is the best to consult, for if we start meddling with other drugs, it could/would probably upset the balance.....has she tried massages/physio ro release the tense muscles in her neck, which may alleviate the migraines??? and if she is trying to study, she is probably under a Lot of stress, which doesn't help either.....I do hope that you can find help for her......Bron
  • deb97936
    deb97936 bluesman

    Posted

    Hi bluesman...  I have had minor minor type episodes and a few real bad ones since my MVA..  and since my MVA...  The bad ones are getting worse however.  I have not been diagnosed with epilepsy, my head scan did show several non specific foci in the brain matter.  

    Only in the later year, I have been simply put on Gabapentine to aid treatment in preventing these attacks/seizure things which have me on my hands and knees rolled up in a ball just holding onto conciousness (I think)..  I vomit, shake etc and have had witnesses.   Last one was a doozie...  I wasn't able to get into the doctors for 3 days!   It took that long to come right.  My doctor was away, I had to see a locum.  She said, nothing I can do for you, and took my money.  I was shocked!!   Later I saw another doctor and they put me on the Gabapentine.  

    I have a neighbour who is a nurse at the centre/hospital and she said if it should ever happen again, make sure you allow folk to call an ambulance, then you have to be checked out fully.   I laughed actually at that, not to her face but honestly, when I had my MVA the ambulance staff under reported my  verbalised pain of 10 out of 10..   the A&E doc subsequently didn't take me seriously...  I was sent home with a head stapled up and told nothing wrong with me.  A week later a phone call from a someone at the hospital to say.. sorry we missed your back fractures ... whoops but you should be ok.   WOW well gosh what about the rest of me...  I never had head or full spine scans and I have suffered terribly since with identified head trauma issues, and full neck/and all spine issues but been denied treatment and assistance via our NZ ACC system....  Shocking, that I am only one of many people in NZ forced through the cracks. Just left..no help no nothing.  Since then the end result is apparently Fibro, and for many years...  I believe myself it has to do with our Central nervous system...  As it was diagnosed for me, which of course is one of those 'umbrella's' to cover a multitude of issues...   Since my head and body has had to put up with the same lingering issues since the months and years after my MVA.  Now after a few years, my body swells up to.. tsk...

    I've had a doctor say it's Fibro, but my doctor doesn't agree...  Unfortunately where I live their are only 2 doctors now..   and a couple of locums on occassions.   So it is very, very difficult to get honest input to medical issues.  hohummm     Even when I have insisted on seeing a Rhuemy my doctor has in insisted on dragging his heels....  It's been '4 YEARS' now and every year the same request I raise and still NO JOY of a referral to a Rhuemy Specialist.. pretty slack isn't it.  

    I agree with Bronwyn that a good neck and shoulder massage would certainly help relieve any tension there,  which does slow blood flow to the head!  Makes us woozie, headachy etc...

     

    • bronwyn97278
      bronwyn97278 deb97936

      Posted

      Morning Deb; the more inputs you type, I am getting Angry on your behalf.....my only answer is re the Visit to Rhuemy....can you afford to go see one without the Referral?   it will not be refunded by your medicare system (am assuming as you are in NZ, and me Australia....that they both are similar?)....it may cost you something like $200+ out of pocket, but if you tried this avenue, and you get somewhere, Then your GP would have to take this into consideration???....what do you think?         Bron
    • lynne50153
      lynne50153 deb97936

      Posted

      Hi Deb - How are You doing now?  Have had Chronic Migraines for 15 years. Getting a massage on my neck, gives me a migraine. Getting adjusted by the Chiiropractor also gives me a migraine. I have many triggers, I get Botox shots to help mine & it works. I take Imitrex - Sumatriptan, w/break through headaches... I wish You Luck - There are many Non believers & many Docs whom will not treat Fibro @ all.  One being my Primary Dr. I highly recommend a Rheumatologist, he did 8 different blood panels to make sure I was not afflicted w/RA & Fibro or Lupus & Fibro, etc... 

  • bluesman
    bluesman

    Posted

    Sorry to take so long to reply but thank you both. I don't know if the headaches are related to the fibro or the epilepsy. She had brain surgery in 2011 which stopped the seizures for 3 years. She hasn't tried massage physio - good suggestion. Sorry to hear of your experience Deb but a fibro diagnosis is an elusive thing sometimes. When I suggested it to my daughter's neuro she rolled her eyes. However we got her referred through her GP to a Rheumatologist wh said it was fibro in his opinion.
  • deb97936
    deb97936 bluesman

    Posted

    Hello Bronwyn and Bluesman...   Yes CNS. the Central Nervous System (Brain/brain stem and spine)...Fibro being one of the many umbrella names for things that they cannot put their fingers on.  Many symptoms from one condition reflect that of another.  Bit like Cereapalsey (sorry splg) that make muscles to tight and flinch also painful....   This to is a brain issue.  Fibro makes my muscles so painful, stiff and hard that they feel like they are ripping off the bones, and my arm and leg can shoot up in the air due to an uncontrollable pain.  Really weird and can be embarrassing.  Thankfully that doesn't happen to often.  

    I am sadly now uninsurable..  so no health insurance.  My life is inside out now and unside down.  Our Govt dictates to our GP's what, who, and how much recognition one gets for issues... and if one can get past the goal post of a diagnose.  Yes I would darely love to actually be able to have a proper diagnostic.  It is no good having one say 'no' and then the other say 'yes' then turn round and say no because Accupunture doesn't work then you don't have Fibro...!!!!   What a crock aye...  I know I sure do.  Trying to get into seeing a Rhuematologist with good knowledge of Fibro seems to be pushing a loaded cart up hill... It's unbelieveable...  BUT that is NZ and it's getting horribly worse!!

    • bronwyn97278
      bronwyn97278 deb97936

      Posted

      well as for the "acupuncture not working then can't be Fibro"  is BULLS....,    I tried acupuncture once, and only once, as when the needles were inserted into my back...it set the pain off MUCH WORSE...which to me made sense....the needles were Aggravating the Nerve Endings......gee you certainly do have some issues....may I ask if you ever had any health insurance?   In Australia, even if you have AN EXISTING ILLNESS, then you can still take out insurance, but have a waiting period before claiming anything related to that....(one of my son-in-laws has had type 1 diabetes since he was 7...but they have health insurance, and he has claimed many times in relation to his diabetes...his Retina detached, and needed much surgery on that eye, and other eye.....all covered).....have you researched on net re finding a good Rhuemy,  as I know that the Aussie Rhuemies are all aware of this condition, and very helpful with treatment.....Cerebralpalsy is a condition related to "lack of oxygen to the brain during birth/drownings etc", and it has a lot more affect on the Ligaments....have nursed many, and witnessed the continual operations that are needed to release the ligaments, which cause the Spascicity of the muscles......with all that you are telling me re your health system, I do soooooo hope that we Aussies don't have to go down that path (but am sad to say that this new premier in QLD has NO idea re the health system/or how it works/needs to be run....we are going backwards in only 6 months, after all the work the previous health minister did in correcting the past mistakes.....as you say,  AN UPHILL BATTLE for some.......I guess that I am lucky in that I have worked with many of our drs/specialists etc so am NOT ignored......Bron
  • deb97936
    deb97936 bluesman

    Posted

    Hi Bron.. yes it's going to get worse in Aussie to...  you can guarantee it.  It's all about the ACC system stepping up and taking over a lot of the Specialist Services etc, AND of course getting the DHB's and their systems on parr with what they want set up for the Insurance business side of things...   Our guys from the Accident Insurance company are now set up over there in the Australian 'organising' the same ball game strategies.  It involves everything from policies, and Business Law.  Screwing down our health systems and all that entails.

    It's all business...  and Insurance business.. Atos (spelling) and the other partner ...  They were done and Sue'd in America for those same practices from the top to the bottom level of practicing medical practitioners...  We in NZ can't sue!  Hence the B'tards' are robbing us blind in levies and our health.  They make sure they don't ever lose.  There are not many good honest doctors now  that can or will go against our system it seems...  Sadly I am now uninsurable!!! grrr  Like a good number of others here.. once forced to be living in the cracks of society, there one remains without a hearing!   Frustrating ... lord you bet!...

  • deb97936
    deb97936 bluesman

    Posted

    I have had acupunture in the past to try and rid some pain aspects and free up the muscles but instead the specialists wasn't able to retract 3 of the needles out!  He had used about 5 needles.  He was panicking as he didn't want to break them off lol...  I could feel him tugging on them and I could feel the tissues rock hard round the needles... was so funny..took him ages to get them out.  No it didn't help either... this was all prior to any mention of Fibro.... 
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.