Severe Weakness - What are my options?

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Oct 25, 2008.

  1. Elisa

    Elisa Member

    Hi all,

    First I am having near continuous severe severe weakness...

    As hard as I have fought I am not doing well...I have had a fever for 1.5 yrs or so now and starting in April '08 fast heart rate and super low TSH. Since then I have lost so much ground that I have to consider a facility - nursing home I guess. I have a dog I love so I don't want to leave my home.

    I am so weak I often can't eat or function all day and night. The weakness stays during the night too. I am really frightened. My family is not able to help me - I live alone.

    I usually have extremely low bp - but have had episodes of 122/100 - which I have never seen before.

    I have been on antibiotics for several years now - straight - azithromycin 250mg/day. For breathing problems - chronic mycoplasma in the lungs.

    What do i do now? I am so weak I just dont move. None of my docs know what to do or really care for that matter. The ER treats me like I am nuts - so I avoid going cause it's useless and they are very mean and mocking.

    I am open to any and all ideas...I am trying so hard to keep going and not give up - but I am not holding on too well.

    I know my survival fears are very high right now.

    Probably not making much sense - but need to reach out and hope there is help out there.

    God Bless,

  2. Bunchy

    Bunchy New Member

    I'm not sure what to suggest but hope others can help.

    I know in the UK a care facility sometimes allow pets. So if it comes to that, maybe you can find one that allows you to keep your dog.

    I'm always concerned about people who report use of long-term antibiotics and then go downhill.

    Did you start to go downhill after you started the antibiotics?

    If not I am probably not on the right track so forgive me.

    You do, however, desperately need to find a caring doctor in your area.

    Maybe start a thread with you area and "help, good doctor needed in this area" in the title.

    I hope you find some help soon - don't give up.

    Love Bunchy x
  3. Elisa

    Elisa Member

    Hi Bunchy,

    Thanks you so much for answering my post. It helps so much to hear from others...

    I had to go on antibiotics - because my breathing problems were severe and inhalers etc didnt work. Now if I try to get off them I get even sicker.

    I have always felt bad on antibiotics - but now I wonder if they have caused even more problems. I do take a ton of probiotics - but who knows if that mitigates the damage.

    It was great to hear that some places take dogs - my dog means the world to me. She knows all my stories and i hug and kiss her lots - she is my family.

    I also wonder if I am not getting enough nutrition (I have celiac as of Jan 08). I am primary organic oriented - used to juice which helped. Now I am just so weak.

    God Bless You Bunch - I felt so scared and alone today thanks for your help and kindness!

    [This Message was Edited on 10/25/2008]
  4. 3gs

    3gs New Member

    your post broke my heart.

    do they have senior centers or services in your area? meals on wheels?

    could you get a neighbor someone to help you look these up?

    please try to eat or at least drink. i to live alone and know its scary sometimes.

    hugs to you and the pooch(i have cats)
  5. dragon06

    dragon06 New Member

    Lots of cities, towns have services in place to help people inside their home so they don't have to go to a "home". There are things like meals on wheels, nurses that come by, just general caregivers, lots of churches have services, community centers and so on. Obviously you are able to get on the computer a little bit so you could look in your area for some services that may be offered for you. But there are options before you have to consider going into a residence. And yes if you do have to go into a residence there are some that allow companion animals.
  6. Bunchy

    Bunchy New Member

    Well I'm not sure about the antibiotics - it's between you and your doctor. Personally if there was a chance of coping without them, I would having experienced deteriorations from them in the past. But it's not my place to comment medically on what the course of action for this is.

    Perhaps if you have to remain on them, your doc could adjust the dose to the lowest possible to keep your breathing symptoms under control or change the antibiotic to a gentler one. Definitely keep up the probiotics as you most probably have candida issues from them which won't help. There are some good ones available. Others can advise you on the most effective brands.

    As others have said there must be a way that some care could be organised for you so that you can remain at home. In the UK this takes a while to sort out but can be achieved with patience and a lot of support from primary care physician and social services.

    The internet is a great place to start when looking into your options.

    Keep posting when you can - you will find loads of support here.

    We are all here for you and I hope you find help soon.

    By the way organic sounds good but make sure your diet is as balanced as you can manage. You may need extra protein for energy and others here can advise on some supplements that are not too expensive that might be worth a try.

    Have you tried B12 injections for example?

    Sending you gentle hugs - keep the faith :)

    Love Bunchy x
  7. ginlyn07

    ginlyn07 New Member

    I am so sorry you feel so week and reading your post I had to ask if you have ever been tested for MG which is called Myasthenia Gravis. Here are symptoms of it: With this, you do not have to have all symptoms, but a major one is muscles weakness and breathing. Please get checked for this

    Myasthenia Gravis comes from the Greek and Latin words meaning "grave muscular weakness." The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups. The prevalence of MG in the United States is estimated to be about 20/100,000 population. However, MG is probably under diagnosed and the prevalence may be higher. Myasthenia Gravis occurs in all races, both genders, and at any age. MG is not thought to be directly inherited nor is it contagious. It does occasionally occur in more than one member of the same family.

    The voluntary muscles of the entire body are controlled by nerve impulses that arise in the brain. These nerve impulses travel down the nerves to the place where the nerves meet the muscle fibers. Nerve fibers do not actually connect with muscle fibers. There is a space between the nerve ending and muscle fiber; this space is called the neuromuscular junction.

    When the nerve impulse originating in the brain arrives at the nerve ending, it releases a chemical called acetylcholine. Acetylcholine travels across the space to the muscle fiber side of the neuromuscular junction where it attaches to many receptor sites. The muscle contracts when enough of the receptor sites have been activated by the acetylcholine. In MG, there is as much as an 80% reduction in the number of these receptor sites. The reduction in the number of receptor sites is caused by an antibody that destroys or blocks the receptor site.

    Antibodies are proteins that play an important role in the immune system. They are normally directed at foreign proteins called antigens that attack the body. Such foreign proteins include bacteria and viruses. Antibodies help the body to protect itself from these foreign proteins. For reasons not well understood, the immune system of the person with MG makes antibodies against the receptor sites of the neuromuscular junction. Abnormal antibodies can be measured in the blood of many people with MG. The antibodies destroy the receptor sites more rapidly than the body can replace them. Muscle weakness occurs when acetylcholine cannot activate enough receptor sites at the neuromuscular junction.

    Common symptoms can include:

    A drooping eyelid
    Blurred or double vision
    Slurred speech
    Difficulty chewing and swallowing
    Weakness in the arms and legs
    Chronic muscle fatigue
    Difficulty breathing
  8. spacee

    spacee Member

    as in adrenal exhaustion. I have noticed myself going downhill the last year. Yes, my Vit D's were below normal and I addressed that.

    Then I asked my doc to do the following tests


    Turns out I have severe adrenal/pituitary/thyroid problems. AND sjogren's syndrome.

    My doc was flabergasted. I am trying to get to see an Endocrinologist but he wants my doc to refer and my doc doesn't want to. (Conflict between two different clinics).

    Even with my doc being "shocked", I do not for one moment think that he cares what happens to me...just another patient.

    The treatment for the above is Thyroid meds (hopefully Armour Thyroid and Cortef. Also, I should take an antidepressant to raise my nonexistant serotonin level but I can't. Can't even take 5 htp cause it make my neuropathy pain intolerable. My brother (a doc) suggested Sam-e. It is expensive but does help a great deal.

    It is so hard finding our way. Getting to the doctor's office is becoming increasingly difficult for me.

    The tests that I mentioned describe a problems in the HPA Axis that we hear about is common with CFS patients.

    Prayers for you, my dear one....that you find help, physically, medically and emotionally.

  9. Elisa

    Elisa Member

    Oh so sweet...

    thank you so so much for your support.

    Hugs to you too and your cats!

    God Bless,

  10. Elisa

    Elisa Member

    Hi Dragon06,

    Thank you so much for your kind and supportive info. Its true that home care may be option for me...I just wish it didnt have to come to that. I wonder if I could even manage someone in my home...the coordination, schedule etc.

    My dog is large and I hope if I have to go to a facility/home that she can come too. I know many take tiny dogs - she's a big lab.

    Thanks again for your wise words!


  11. hermitlady

    hermitlady Member

    I know exactly how you feel, I've been progressively getting more weak and fatigued over the last 2 yrs...the last 6 months have been horrible.

    From reading and posting here, I've learned so much. I have a great doc who is open to my suggestions as far as testing etc. He knows I do a lot of research on this dd.

    I'm in the midst of testing for adrenal fatigue/exhaustion. In my heart, I feel that this has to be the major cause for the way I've been feeling. Stress is a major factor in causing this...I've been under A LOT of stress for 10+ yrs (devel disabled, autistic, bipolar 16 yr old daughter that I have to fight w several times a day. Actual physical violence is a norm w her, I have bruises to show for it).

    Anyway, maybe getting someone to come in to help you in your home would work for you for now. My mom had in home health care aides come in to help take care of my dad for several months before he passed away. They were a big help, but it wasn't cheap...I think it was around $13 per hour. They did all kinds of things besides giving Dad baths etc, even mopped the floors. You just might have to go thru a few before you find someone you feel comfortable with.

    I wish I could afford to hire some household help, my house is a wreck cuz I cannot keep it up. I have a housecleaner come every 2 or 3 wks if I can scrape together the $$ for her, it helps. If I could just get someone to do the laundry, that would be a huge weight off of my shoulders. I never seem to get more than 1 or 2 loads done at a time, I can never keep up!

    I think you should do all you can do to keep your beloved dog, they are such great companions. My pets are my daily therapists, I don't know what I'd do without them...cats and dogs. That's an important part of your life, a good part!

    I wish they would find a cure for all of us, it just isn't fair to feel this lousy all the time. Best of luck to you, I hope you find some help soon.