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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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son 30 what to do? his ultrasound came back fine doc thinks it is all in his head!!!!

Discussion in 'General Symptoms' started by hensue, Nov 4, 2011.

  1. hensue

    hensue Senior Member

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    What to do now?

    Son is so fatigued now and they have taken him off celexa and klonopin. Put him on cymbalta and neurontin. He still has slight alt enzyme and the fatigue is so bad he can barely talk.
    I called Mayo clinic in Jacksonville Florida. They told me they did not have the facilities for a workup or diagnostic workup for him. (what??)
    I said why? because you think it is all in his head??

    If it is chronic fatigue the lady said only in MN could they find that out?? I said why do you think it is chronic fatigue? She said with pain and fatigue him on ADs. He needs to go there??

    I told them I live 3 hours from you in Jacksonville florida the whole reason to get a diagnostic workup was to rule out any medical issues not phsyc.

    I am pissed I have promised him we would get him some help.
    He has terrible gas and feels SICK. He just feels ill all the time. He gets up and tries to go and do. Then the sick feeling washes all over him.

    His ultrasound of his liver and pancreas came back fine. He says he has pains in upper right abdomen and lower groin. His back with the slipped disc and 3 or 4 ruptured ones are not bothering him.

    Everbody please tell me what to do. He is my son and they are just looking at the panic disorder.
    Thanks
    Susie
    I hope this makes sense. Do I still send him to Klimas again?
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi Hensue, i PM'd you about back pain but if theres other issues going on, yes go and see Klimas and get a proper work up. Atleast she can tell u if its cfs or not and can rule things out for you. Like i have mentioned before, AD's can make cfs people worse and can increase anxiety even though they help some people with anxiety but if he has cfs then ad's if used should be used in small doses, i bet they have him on large doses which might not be helping. Just remember if he go's off them to taper off slowly as going off too fast can cause alot of problems itself. I think he needs more immune tests and viral titres for the herpes infections is a starting point, but remember severe back pain can put the whole body out of whack causing aches and pains everywhere.

    good luck,
    cheers!!!
  3. hensue

    hensue Senior Member

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    He def needs to go see Klimas get a work up. He is now having panic attacks he has had them before but now it seems worse. he is only on 30 mg cymbalta and 300 mg neurontin 3 times a day.
    His pain is good in back not sure if it is from cymbalta or neuontin?? I had cancelled with Klimas because I thought we had solved the problem ( slipped disc and ruptured disc) When he was young he was on antibotic every month of his life. No kidding for the first 12 months. I looked back in his baby book ear or upper resp infection.
    He has been on these meds about 3 weeks?

    Take care and everyone on this board will hopefully keep me from being so freaking stressed out!
    It is really bad when you cannot help your child and cannot.
    I know it could be a lot worse but my head is spinning about what to do? Or how to get him on the right track?
    Susie
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Hensue,

    I remember reading your posts but have forgotten the details, so please forgive me!

    First, I know from friends who have gone there that Jacksonville Mayo is not the place to go for this kind of work up. And others say that neither is Minn. Mayo.

    Have you been to Klimas before? She would be a good one for doing relevant tests and giving you some idea what is going on.

    Keep on being a good mother--their is no better advocate.

    Best wishes,
    Sushi

    PS, just read this horror story from Mayo: http://treatingxmrv.blogspot.com/2011/11/are-we-crazy.html?spref=fb
    hensue likes this.
  5. taniaaust1

    taniaaust1 Senior Member

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    Im with what the others have said, the mayo clinic isnt probably the place to go (esp since they themselves recognise they probably wont be able to help him at all). Take him to Klimas to see what she says. At least she will respect him and that the illness he has is very real and be working from there.
    hensue likes this.
  6. taniaaust1

    taniaaust1 Senior Member

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    Sounds like he may be trying to push himself too much and may need to come to accept more his "current" level of limitations. It is hard to do that esp if one hasnt been ill a long time and if people arent believing just how sick one is..

    Take care of how much energy he is using in his interactions with you. He may also be pushing himself then. Talking and convos when we are very sick can push us beyond what we should be doing.

    best wishes
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    hensue likes this.
  8. hensue

    hensue Senior Member

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    His wife thinks it is in his head and he has always had panic attacks and social anxiety now agrophobia. He was told to leave his home in April by his wife because he was lazy. He heard his disc pop in his back when he was laying bricks for a patio. Of course no one would believe him. When he was kicked out of his home he came to my house. He was running back and forth to emg rooms saying something is wrong physically and having panick attacks thought he was dying on the interstate and had to call an ambulance. He was upset came home I did not realize at the time he had quit eating and was pacing I really think he was having a breakdown. His wife wanted a divorce. All he lives for is his only daughter she is almost 3 and he has raised her. The woman he married is 8 or 9 years older married before and was a sailor. She has 3 children from a previous marriage that he cares for everyday. He use to work with my husband and now he can do nothing. He tried to go to school and had to drop his classes.
    He came into the marriage with A1 credit she put all her bills in his name and he had to claim bankruptcy. Right before she took his money he had saved close to 15,000.00 and got a VA mortgage in her name. He puts her through school for her last two years. She has a child our only Granddaughter and he stayed home to raise her the first year because they did not want to put her in day care. Since then all his life is about or cares about is his daughter. Everything has gone from bad to worse. He is basically around now as a babysitter and running errands etc. She cannot be home because her job takes her out of town but she is back by night. He does not want to leave and when was here in April and I saw what was happening The physc in my town put him own Citop. or generic for celexa and klonopin. Of course she needs him back home and he goes. She has no one to pick up kids, run them to doc etc. Cook dinner.
    He kept telling us something was physically wrong with him not just mental. He is well aware of his panic attacks. It took us almost 6 months and mom going to NC and changing docs to do and MRI on his spine and he has a lumbar huge slipped disc. 3 or 4 herniated disc on up the spine.
    Here is where the bad part is he is not having that much pain now from the discs. He just feels sick and weak fatigued not refreshed. A sick feeling all over.
    ok let me say this I went to NC and he put a Knife up to his throat and said I would rather die than feel like this for the rest of my life. A huge knife from the kitchen. I immediately called 911 they came he said I did this but I need help not just mental and no one will pay attention. I put him in the hospital and the docs changed his meds from celexa and klonopin to cymbalta and neurontin 30 mg cymbalta in morning 300 mg neurontin 3 times a day.
    He says he is still physically sick and no one will listen. That is when I called Mayo but I guess they got all his info from his insurance but I did not tell them.
    Now I am glad he did not go there. At the same time had we not pushed it we would have never found out about his back. He is having GI issues gas hearburn fatigue all before the new meds. His alt enzyme slightly elevated they did ultrasound on abdomen and liver etc. and now it is back in his head.
    He was doing better I thought the first couple of weeks now this week he is having severe panic attacks.
    So that is where we are and it is enough to drive any crazy. So where do we go from here basically everything checks out good except the back issue and slightly elevated enzymes alt that is on paper.
    I do not want him to have CFS and he can sleep at night with no problem. I know a lot of us are different and some can sleep.
    I have gone overboard talking and have taken my sleeping meds. lol can you tell? His wife insisted they go see her parents this weekend in Ohio and he was suppose to drive thru mountains of West Virginia. He cannot hardly function much less drive.

    What is happening to him?? Is it in his head or physical or both??
    Please erase this I know I have typed to much.
    Thanks so much
    If he goes to Dr Klimas is she going to help him if he gets this CFS diagnose him? I think if he found out he had something at this point he could not take it.
    I dont know what else to do.
    Suggestions
    Thanks so much but this is scary!
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi,

    It is late so I won't say much except that panic attacks CAN BE a symptoms of ME/CFS. Many, many of us have had them because our autonomic nervous system is in dysfunction. This dysfunction may be part genetic but is also precipitated by toxins and pathogens. An ME/CFS diagnosis is a good things in many ways, as it opens treatment avenues.

    At this point you don't know what is going on but standard lab tests show very few abnormalities for ME/CFS patients. Nancy Klimas would know which lab tests to order that could indicate or rule our ME/CFS. I personally felt very happy to finally get a diagnosis of a physical disease, even though it is very hard to treat. The ME/CFS specialists are often able to get patients in much better condition if not cured.

    Sushi
    justy and hensue like this.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Like you said, that sort of stress going on would drive anyone up the wall and add is back problems and then fatigue issues. He has a few things going on he needs to sort out but i suppose its not going to happen overnight. I think we can all understand feeling depressed and knowing its not the cause, he's depressed about feeling like crap, sick of being sick syndrome. He needs a sympathetic doctor to work him over properly. I think he has got psychological issues going on with the stress of his home life for sure plus all the physical issues. Sometimes the meds can be an issue but need a good doc who can work this out. At the moment it doesnt sound like his head is in a good place and needs help there first and then the physical stuff.

    hi scenario sounds lot like cfs, in that he cant get the help he wants or anyone believe him about his problems. All u can really do is be there for him and offer him support and advice with doctors etc. As far as not being able to take a diagnosis of cfs, it depends how the doc tells him and positively tells him they can help. I think this is a process all of us have been through although he seems very reluctant to accept it, but in the end he has to , to move forward.

    Struth! you got alot on your plate. I hope every thing gets sorted for you guys soon,
    best wishes and take care!
    hensue likes this.
  11. Valentijn

    Valentijn Activity Level: 3

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    Cymbalta affects both norepinephrine and serotonin. Some people with ME/CFS find a little serotonin helpful, but it also seems to cause some of us a lot of problems. Basically it sounds like at least some get Serotonin Syndrome symptoms even with very low doses ( http://en.wikipedia.org/wiki/Serotonin_syndrome#Signs_and_symptoms )

    You could ask his doctor to check his neurotransmitter levels to make sure he really needs to increase the ones affected by Cymbalta. In ME/CFS, high glutamate may be a more common problem, and the Neurontin may be helping with that by giving a boost to GABA for counteracting glutamate.

    But another option could be to lower glutamate directly, such as with Lyrica. Supplementing N-acetylcysteine may also help to lower glutamate levels.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Wise words.
  13. taniaaust1

    taniaaust1 Senior Member

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    He may not react at all like you think to the news.. he knows he is sick. From your post it sounded like he's quite bothered by people just thinking its in his head so hearing that he actually has a physical condition with it may possibly be relieving news for him at this point.

    ME can over stimulate our nervous system and give anxiety and panic attacks. Knowing too that its being caused by ME if it is, can also help guide one to treatments more likely to work for us and ones less likely to give us issues.

    that quote is from http://wwcoco.com/cfids/bernesx.html based on studies on ME/CFS patients.

    These symptoms with the nervous system over reactivity may be showing he needs to slow down. Be aware that chemicals too may cause panic attacks for some of us.
  14. markmc20001

    markmc20001 Guest

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    yes, including prescription drugs. that neurontin was like poison for me. so is cymbalta or wellbutrin.
  15. leaves

    leaves Senior Member

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    Hey Sue sweetie,

    After reading your posts I still do not know what is wrong with him. if only there were good doctors available to us!!! However what I do see is that his wife has a VERY bad effect on him. irrespective of the cause of his symptoms i think it is important to deal with that ASAP. Why is he still with him? It sounds like abuse to me. I understand that there are children involved, but for his health i think it is important to reduce her influence on him.
    xoxo
  16. hensue

    hensue Senior Member

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    He has one child a daughter who will be 3 in december. He tried coming home and cannot hold a job but 3 states away he could not handle being away from her.
    I know he was shy as a child and did not realize as he was growing up how shy. Panic attacks before he got married but depression and panic a lot worse now.
    I am at a loss he is not that far from Ashville nc not far from Cheney maybe 2and half hours.
    Maybe that is my best bet.

    I dunno what to do....
  17. justy

    justy Senior Member

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    Hi Hensue, forgive me for short post but im not at my best but really want to respond. I also had severe anxiety and panic attacks at the beginning of mt illness and again before my serious relpase 3 years ago, as allready stated above this can be because of CFS. I spent 17 years being told its all in my head until my head was well and truly done in with it all -like your son. I now have a firm diagnosis of M.E and i only got that because i went to a respected M.E specialist, had the right testing and got a proper diagnosis. Now my anxiety is more or less non existent because i am taking the right supplements, pacing properly, resting and eating right and most importantly i now KNOW it is not just me being crazy but that it is real.
    It doesnt matter who it is but he must get asap to a proper M.E/CFS doctor and rule M.E/CFS in or out. If you want to help your son i wouldnt faff about anywhere else except with one of the respected experts -whoever its easier to see.
    Please do take care of yourself in all this too. Justy xx
    kurt likes this.
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Dr. Cheney has a waiting list of about a year and the first visit and work-up cost $7000 or $8000, so that is something to consider.

    Best,
    Sushi
  19. hensue

    hensue Senior Member

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    YUK
    That is def something to consider. Maybe Dr Klimas will see him even though we had cancelled the appt.
    Thanks Justy it is weird to me how many people on here have had panic attacks. I take of all things wellbutrin Sr 150 mg twice a day. I know I was diagnosed with Fibromyalgia and all my symptoms were pain. Then the fatigue hit like a ton of bricks. Wellbutrin still helps my fatigue and my pain. Most people have a lot of anxiety taking it. When I first started taking it I was given valuim to counter the anxiety. As far as sleep my whole fam just about takes klonopin and still do not sleep.
    He is so exhausted he sleeps big time. I have decided no matter what I will call Dr Klimas and see if she can get him in. As far as lime he had a tick in him and a bullseye rash. He completed a round of antibiotics after the doc saw the rash. Of all places he was working in the woods in Minn.
    We live in the South deer tickets are common.
    Thanks everyone
    I will keep you updated. I am praying the outcome will be good. As far as I go I never get colds and have caught something viral. I guess it is viral sick to stomach and head cold and very weak. I am sure I will be better.
    Take care
    susie
  20. leaves

    leaves Senior Member

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    Oh Sue definitely see a lyme literate doc too! Who does the proper lyme tests, (IGENEX) klimas does not run those. i think first go to lyme doc, then go to Klimas.
    kurt likes this.

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