Posted , 6 users are following.

Hello I had a brain tumour (menigioma) removed in 2012. I am highly fatigued and if I do anything physical I get pain all over esp my neck, spine and ankles feel heavy.

I was diagnosed with CFS/ME and fibromyalgia in 2015 they say I tick all the boxes. I'm not sure if it's my brain injury causing my symptoms or ME fibro. I only get to see a GP for 5 minutes my after care has been rushed. I just want to move forward. I can't wear a normal bra because I swell. I have to wear an XL belvia bra and I'm a medium frame. I wear only memory foam sketchers. It's a vicious cycle. Is there anywhere I can go privately that isn't to expensive to see if the NHS are missing something? X

0 likes, 15 replies

15 Replies

  • Posted

    There are many paths into ME/CFS--basically any assault on the body, be it a virus, an infection, a car accident, whatever. So I think it's possible that your brain tumour and operation could have triggered ME/CFS. Does your fatigue get worse after exertion? You note that your pain gets worse, which is a red flag for this illness. Go to the "solve me/cfs initiative" website to see if the symptoms resonate with you. If you do have ME/CFS, it's especially important that you get plenty of rest, pace yourself, and don't try to push through the fatigue. I hope that someone on this forum who lives in the UK can help you with your NHS question (I live in the U.S.)

  • Posted

    HI gemmagemma,

    Do you mind telling me why they decided to remove the meingioma? I also have one that is 3cm, and they said they wouldn't touch it unless it caused me problems. Was it causing you problems and/or symtoms? Just curious. 

    Does your doctor believe that CFS/ME is causing your symptoms or the brain injury due to the sugery? I'm very curious about this since I have both CFS (have had it for 25 years) and a small menigioma. Thanks, KPD

    • Posted

      Hi there

      I had a seizure and the tumour have large so it had to be removed

      I get my scan results in a few weeks so I'm going to ask the surgeon a lot of questions whether the symptoms are brain injury or cfs fibromyalia

    • Posted

      Good luck with at your doctor's appointment. Hope you can get some answers. Please do keep us posted. KPD

    • Posted

      Hi KPD

      I have suffered with vertigo for several months and in trying to find a reason the MRI showed a meingioma.  Quite a shock.  It is located in the sinus cavity behind my right eye.  It cannot be removed because it is wrapped around my carotid artery.  The CFS symptoms have gotten worse since the vertigo started.

      I was diagnosed with CFS about 20 years ago.  I found an enviromental doctor who helped me a great deal with infusions.  He retired after about a year of treatment.  Gradually, over the years the symptoms have come back and are now debilitating.  I guess I should also admit that I am 73.  I'm told by every doctor I see that all my symptoms can be attributed to "old age."  I don't believe it for a minute.  I fit too many of the CFS criteria. 

      I had rotator cuff surgery in 2012 (with a recovery of close to a year).  Some of the sites say a surgery can trigger symptoms.

      None of this is helpful to any of you - guess I am just seeking common ground with someone who "gets" it.

      Thanks for listening.

    • Posted

      I knew someone would ask - I wish I remembered and I don't have any of the doctor reports anymore.  Dumb, huh!

    • Posted

      HI Brenda,

      I was diagnosed with CFS 25 years ago, and I am now 55 years old. I've gone though ups and downs throughout the years. I was also diagnosed with a 1.1 cm menignioma. They found it bc I was suffering from bad headaches. I have not looked into having it removed, since brain surgery is major and I'm not certain the the symptoms I have experienced are due to the tumor. What size is yours? Do they think that the menignioma is causing the fatigue? Thanks, KPD

    • Posted

      I don't know the size.  I'm scheduled for another MRI in a couple of months and I will ask.  Honestly, I was so stunned by the whole situation that I didn't ask a lot of questions.  I saw two neurosurgeons and they both gave me the same advice.  No brain surgery - a lot having to do with my age as well as the location.  They didn't think it is causing any symptoms.  I really wonder about the vertigo, which I still suffer with but they didn't seem to think there was any connection.  There is such a mystery about CFS and so many doctors still think it's not a real thing that I haven't found one who think the fatigue is important.  Guess it would be if they were dealing with it!

    • Posted

      I'm in the same boat as you, Brenda. My doctor didn't seem to thing that a tumor this small could cause symptoms, so he recommends that we continue to repeat the MRI every few years to make sure it hasn't changed or grown any more. Most benign meningiomas grow very slowly over the course of a lifetime. 

      Agree that most doctors do not know much about CFS and think we all get tired from time to time. It's very frustrating and I have not been able to find a doctor that I could really say is knowledgeable about the syndrome. Keep me posted once you get your next MRI. Good luck. KPD

    • Posted

      Hi Brend 

      One of the key diagnostic markers for ME/CFS is fatigue post exertion including delayed fatigue post exertion. Do look up  the NICE guidelines on ME/CFS. they give a list of the primary symptoms. you could take them with you to the Doc. 

      re: the Vertigo, I had quite marked Vertigo, that was later to be found to be low B12 & Folate. It would be worth your while having it checked, when these are low, all ME/CFS are worse. Many of the symptoms overlap with ME/CFS.

      GOOD LUCK  


    • Posted

      Thanks for sharing your experience with me.  Good Luck to you also.


    • Posted

      I am just wondering if anyone has figured out to describe the fatigue we feel. Tired isn't even close.  People will say, "Oh, I know how you feel.  Ijust worked out and I am sooo tired."  Nope.  My sister just asked what I had been doing to be tired.  I wanted to say "breathing!"  So frustrating.

  • Posted

    Hi jemmajemma

    Gosh, you're in one of those difficult ''chicken & egg'' situations. I'm wondering if you had the fatigue & fibro. pain prior to the surgery and if ''yes'' to what degree. 

    also, has your Menigioma been graded and do u know it's location.

    from what you say Gemma, i'd most definitely want some ''proper'' follow up care. i know ''care'' generally speaking, is a bit of a ''lottery'' presently in the UK, however, you can ask your GP to refer you to the consultant ''privately''. the consultation will cost you approx. £150 - £200.  btw, if the consultation is at the NHS hospital, the consultation fee goes back to the NHS. the consulation usually lasts circa 20 minutes.

    as usual, it's ideal  to bring someone along with you and have your questions ready. for that, you'll need to know the basics 1)where EXACTLY is/was the meningioma located in the brain.  the location is key to the intervention required & follow up care. also if you can find out the meningioma grade i.e. grade 1/11/ etc.and read up on the treatment for each and be informed to make optimum use of your consultant appoinment.

    as someone has pointed out, there are many pathways to /ME/CFS i.e. your symptoms  could be due to the surgical assault to the very sensitive tissues - neurons & blood supply to that part of the brain operated on. the surgery/assault could have precipitated   ME/CFS, or your symptoms could be due directly to damage done by the pressure of the Meningioma. 

    Most patients seeing a GP in the UK today are diagnosed using the criteria outlined in the NICE Clinical Guideline of 2007 (read the Guideline and supporting documentation on the web site the ''ME Research org''.  they are also very helpful on the phone i.e. signposting ppl. 

    all good luck with it & hope you get help necessary. i can't help feeling that some of your symptoms (like the swelling etc) can be effectively addressed if the experts can find the actual cause.


  • Posted

    Morning Gemmagemma;  I have been waiting to see if anyone else comes up with anything more definitive for you, from the UK.  I, too, do not live in the UK, so am only able to go on what others say re "where to go".  For me, here, Australia, I would suggest you get a referral to a Rhuematologist, and if you can afford to pay for your 1st visit out of pocket (with a rebate from the NHS, if it works the same as here).  The Rhuematologist, along with your Neurologist, should be able to find you the best care for your Fibro and CFS. (or at least confirm the diagnosis).

    ?As it has been said, any trauma to the body (and you certainly fit the bill), will cause Fibro and CFS.  I can understand your concerns as anything to do with our brain,is going to always be with us.  I am hoping that your Neurosurgeon is following up on your progress, with regular (at least 12 monthly checkups/ scans etc) to at least alleviate any worries there for you ???

    ?Have you been seen by a Rhuematologist at all, to give you your diagnosis of Fibro? and if so, what treatments have been recommended for you for your pain, and complications?

    ?I feel the 1st step I would be taking is in getting that referral (and how I do it with my to find the Rhuematologist that is recommended to me via Word of Mouth or researching for one on-line that Understands Fibro Completely), make an appointment with the Specialist, and then ask your GP  for a referral to that Particular Specialist.  I class this as "taking my own steps for my own care", and don't let your GP convince you otherwise.  If you find that you are not satisfied with the 1st specialist you see, then keep looking.  Usually if 3 all come up with the same conclusions, then you would know that their conclusions should be accurate.

    ?I know this sounds daunting (and we have so little energy as it is); however, it has taken me a LOT of trips to various people to find what works best for me.  I will add, that if your diagnosis does come back as a positive for Fibro, then I must tell you that it is not going to be easy to find what works for you, and will need Much trialling of meds/therapies etc, and even then, we still arn't always going to be happy.  This condition is always throwing something new at us.

    ?Please keep in contact, and let us know how you get on with your search, and what is recommended for your pain etc, as I keep hoping that "something" new is found, that will help all of us.             Thinking of you............Bron

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