Please help my husband and family understand...

Discussion in 'Fibromyalgia Main Forum' started by shellbelle8, Jul 14, 2003.

  1. shellbelle8

    shellbelle8 New Member

    I have had fibro for about 6 years, also IC (interstitial cystitis), and other related illnesses. Mostly my husband just tolerates me, and I work in a family business so my family gets alot of laughs out of all of my ailments. I have learned to deal with them. Right now, other than 24 hour pain, I am in a state of exhaustion that noone can understand. I work full time, so when I get home from work I throw myself in bed and don't (or try not to) get up till morning. On the weekends, I stay in bed, or else move from the bed to the couch to the computer, and back to bed again. To me, this is terrible, and extremely depressing, but it is my life right now. I have not even turned 34 yet (July 27th is my birthday). I am taking about 8 different meds right now (antidepressants, muscle relaxants, anti inflammatories, percocet, meds for my ic, meds for heartburn, ambien, etc). I also had a sleep test, which found that I have mild apnea, and recurrent interruptions in my sleep. But my alpha, delta, and REM sleep seems normal (or whatever it's called). So its not like I'm sitting around doing nothing.
    I went to my pcp a few weeks ago for a strep test, because I had strep two weeks prior and felt symptoms coming back. I didn't have strep, but I had a huge canker sore in the back of my tongue. My pcp said, "you're just completely worn out", which is nuts because I am so sedentary and I don't do squat! Of course, now I have about a dozen or so canker sores all in my mouth, on my tongue, the roof of my mouth, inside my lips. And of course with the canker sores I have headaches, throat pain, glandular swelling, earaches, etc. I am totally exhausted as well, but I can't get anybody to understand how someone who lays around most of the time can be exhausted. I've been trying to find some websites on canker sores and fatigue, but all I've found are advertisement-type websites. Can anybody else relate, and more important, how can I help people understand why I'm so tired all the time?
  2. bitter-sweet

    bitter-sweet New Member

    I am fortunate to have a supportive family, and it always pains me to hear of situations like yours. Have they tried reading some of the messages here on the board? I know others have had family members do so. There's lots of great information here too. Maybe if they supported you some, you wouldn't feel as bad. This is for better or for worse as far as your husband goes. Shame on him! Pray for help for him. Wish I could help.
  3. Hippen

    Hippen New Member

    First, let me say that I am not a doctor so what I tell you is only my opinion. First of all, you need to "BUILD UP YOUR IMMUNE SYSTEM !!!!! A guess of mine would be that you have Fibro and Chronic fatigue with immune deficiency syndrome like me...aren't you lucky?????? LOL Vitamin C, echinacea, and OLIVE LEAF EXTRACT, could help you with many of your problems. You are taking many meds and should check with your doctor for any drug interactions first. As for your hubby...he needs clued in on all the details of this disease...thinking it would not be so funny if it were he that was sick and not you. Nothing about this disease is funny...though we must continue to find ways in our day to day life to find humor in the smallest of things. This tends to ease the stress of this disease. You can print some info from this site to give to your hubby and family so they can see just how not funny this disease is !!!!!!!!!! You are not crazy or lazy are very sick and need to get "real rest" and help your body start to fight back. I was once sick all the time with sore throats and sinus problems and swollen lymph nodes. I have found a self planned routine that works to keep my immune system hanging on to fight the basics. I really feel for you at this hard time in your life...hang in there and get to work on building up your weakened immune system. Sit your hubby down and make him see what exactly you are dealing with here. Good luck !!! Hippen
  4. jeniwren

    jeniwren New Member

    Hi Shellbelle8,

    Sweetie I'm so sorry that your family is not supportive. Mine isn't either, but that's another story. Having them read some of the posts here or even just the biogs might help them to understand what it is you're going through.

    It depends on what their view of ill is, as to whether they would be willing to do that. Some people believe that if you're not dying or suffering from a broken arm etc, then you've got no reason for complaints. Unfortunately there's not a lot you can do about that type of narrow-mindedness.

    I have FMS too and I tell people that I have a severe form of arthritis that causes severe fatigue. They seem to understand that without too many Q's and generally leave me alone.

    Working full-time and suffering FMS, I'm not too surprised to hear that you're extremely tired. Add to that the stress of other illnesses as well as being ridiculed by those who are supposed to care for and support you. Of course you're fatigued. You sound like you're also suffering some depression in relation to your illnesses, but also in relation to the lack of support and care from family, which of course will add to the fatigue levels.

    I truely hope that you can find a way to convince your "husband" (for better or for WORSE) and your family that you are suffering a legitimate disorder/disease.

    People who doubt that I'm really ill have no place in MY life. Life is too short as it is, to waste it on ignorance and prejudice.

    (((HUGS))) Jeni

    [This Message was Edited on 07/14/2003]
  5. Lynda B.

    Lynda B. New Member

    If you have these medications then you must be seeing doctors. That should give you some credibility. Get a copy of your medical records and let your husband read them. If necessary, take him with you to the doctor(s) and let them exlain to him the seriousness of the situation. As I said, I am sure it is not that simple but that is one thing that I did to make sure my husband understood the degree of my disorger.

    Lynda B.
  6. Dara

    Dara New Member

    doctor who said the mouth sores were canker sores? The reason I'm asking is that when my daughter was quite young she started getting what I though were canker sores, she was also very ill, very listless, fatigued, could hardly walk. As it turned out they weren't canker sores, it was Herpes Simplex ?? Something, but can't remember now. This isn't the type of Herpes that is sexually transmitted so don't mistake it for that, please... It is actually a virus, the same virus as Chicken Pox and Shingles. I'm sure if your doc said they were canker sores then they probable are just that, I just wanted to throw out that suggestion.

    As far as your family goes, I think a lot of us have that same problem. I know that my husband and other family members have no idea what this dd is really about, nor do they want to know.

    If you are as exhausted as your doctor says then can you take time off of work to see if you can rest and start feeling better? I would take a family member with you to your next doctor appointment, then maybe they'll understand and let the rest of the family know just how bad it is. I hope you'll find some relief very soon and more compassion from your family.

  7. rosemarie

    rosemarie Member

    any of what I have . I was dx"ed with fibro about a year ago . But as my family would tell you nothing is different now that you have fibro you never did sleep at night or want to be up and going before noon, and you have always had some thing that you in in pain and taking pain pills so what is different now that you have a name for it ? Are we supossed to be happy about the fact that you take so many pain pills and your always so tired and youstay at home and do nothing all because the " Doctor" told you that you have fibro. SO I try and not say anything about it but that is not working and I really try to be up before noon but as you can see by the time of this post I am a wake not asleep and when I do go to sleep I wake up and wander around the house so once again I am not up and going. I don't have a job right now but that has to change soon because my unemployment is going to run out and I am on the extended unemployment so I have to find a job some where . Now to tell you what I have that is holding me back from working is not only do I have fibro I have two discs that are bulging in my back L4-5 , S1 and I am afraid that the problems with the discs could lead to degenerative disc diease , my knees have arthitis and they are deteraterating and I will need new knees with in five years, and to finish it all off my right ankle was broken 5 years ago and it still gives me alot of pain when I broke it falling I also had hair line fractures in my tiblua and fiblua as well as in my ankle.So now at 47 I am hurting and falling apart and the only thing that is holding me together is the stress in my life. As of Feb. 2003 my husband of 22 yrs wants a divorce because he is not happy and is missing out on life.
    Wow I sound depressing don't I . I know that while my family don't understand what this dd has done to me or that I most likely have had fibromyalgia since I was about 10 years old, I know that they love me and do alot to help me in their own ways. Even tho my husband wants a divorce he has not filed and still pays the house payment and gives me money to buy groceries and for the co-pays for the doctor and Rx's. So I know that he is trying and is still helping me. Having this chronic pain stuff really bites partly because you don't look sick and when you tell people that you are they don't know what it is like to be in pain 24/7. So I have found help and friendships with this forum and others. The people here understand what youare going thru and will listen whenyou need to vent and they won't get mad bacause you vented at them . I hope that your family comes around and gets with the program. But until that happens take care of you , rest when you can and get to know this forum and remember that God loves you no matter what and he will help you too , I believe this and I know that without having God in my life I could not get thru this , Take care Rosemarie
  8. Shirl

    Shirl New Member

    Hi Shellbelle, welcome to our world. So sorry you are so ill and that you lack the support you so badly need.

    Lynda was right, take your husband and as many of your family members you can get together and bring them to your doctors office. He told you that you were exausted, then let him tell THEM what your condition is.

    If that does not work, I can't imagine what will. I had a doctor like yours once (he passed away from over work), and he was all for explaining to my husband and children how badly this illness is, and how stress was making me worst (which I did not understand at the time).

    These type of doctors are few and far between these days, so take advantage of the one you have and let him lay it out for your family.

    It seems your family is causing your symptoms to escalate, the stress alone is making you sicker. No meds are going to help untill you get your surrondings straight.

    Take care, and let us know how you are doing.

    Shalom, Shirl
  9. shellbelle8

    shellbelle8 New Member

    I really appreciate all of you taking your time (and energy) to reply to my message. It is hard to ask for time off, because I work for my dad and he is one of the many who does not understand. I have to say that he tries to understand, but I don't think ANYBODY who does not have this dd can ever understand. I am going to order the book that one of you suggested, and I will try my darndest to get my husband to read it. As far as the canker sores go, I don't think I recall if my doc actually called them that or not, but I thought that all canker sores were herpes simplex (whatever). I thought the wording was interchangeable. But she didn't seem to think I had an infection or anything. I just know that when I get the sores, my glands are swollen and sore, I have a low-grade fever, my throat is sore, and my ears ache as well. Sounds like some sort of infection, doesn't it?? I had her check my ears for infection cause they were hurting so bad, but they were fine ("negative", don't you hate that word?) Anyway, the sores are still there for now, and they're worse at night because bacteria tends to flourish while you're sleeping. So when I wake up my whole mouth is swollen and it takes a few hours to feel half-decent. And today, I bit one of the sores, and it bled and I thought I was going to cry it hurt so bad.
    Well, I don't care if anybody actually reads this, because its so long, but it sure feels good typing it out! Thanks again for the support, and I wish the best for all of you. And I will let you all know if the book helps any.