[livingwith]

My husband was injured at work December 19, 2007. That was the day that changed our lives forever. Since that day I have seen my husband go from a cane to a walker with wheels and now a wheelchair. I watch him suffer everyday in silence. His left leg and foot swell. His foot turns red, blue and sometimes purple.
The countless Doctors the MRI’s. None with a reason why. The anger that his wheelchair does not fit through the bathroom door. That we need a ramp so he can get out of the house. T...Read the full article

[G0J0G0]

Good morning livingwith,
I feel you pain and your husband's pain diectly. I have RSD in the same areas and can say that everyone of the frustrations you all are experiencing are perfectly normal and would be abnormal if they weren't present. You are writng under the heading of "fear of the unknown" there is a peer to peer section of this website this offers a wealth of information and support for people like yourself that have unaswered questions. I hope this sends an email to you so you can reply. To find the P2P section, look for RSd in the list to the left and click the link. This opens an information page that describes the disease. Read this and at the bottom of the page look for "join the RSD forum" button, click this and select the topic of interest and or start your own topic. You can read the entries and reply to any and all you encounter. The unknown that you all are experiencing is to be feared, but knowledge is power and here you will find an abundance of knowledge. Know this also your husband is going to need an extra load of understanding and compassion from other members of the family, so I pray that you are enalbed with an extra amount of the before mentioned. Here is praying that you all are to tame the fiery monster that has attacked your home. G0J0G0

[bumpkin]

Hello. I know a little about chronic pain, even though I have not yet been diagnosed with RSD... my Doc is beginning to treat me as though I am a 'drug addict' because I still hurt. I am trying to learn about why I hurt so badly even with pain meds. I have my own story, but it's another page. I understand your anxiety and frustration, and your husband's agonizing determination to do his best, and in as silent a way as possible, to spare you as much suffering as he can. Pain opens a whole host of life's problems. I am concerned about the swelling, in your case and in the case of some of the others' stories here. Pain can be 'bone', or 'nerve', or 'soft-tissue' originating. (soft-tissue covers anything soft, not bone or nerve in makeup) Swelling is a by-product of injury or insult to the area affected. Usually, swelling is connected to injury- say a bruise, or a cut, or crushing of tissue, or a breaking of bone, perhaps an infection in, or dependent to, a surgery site, perhaps a foreign body in the area, as in retractors or clips left in a surgery site that shouldn't have been) Is the swelling 'gross' or 'massive' or, is it slight? (yes, still very painful) Is the swollen area 'red and hot' and firm? All these things make up info needed to treat a problem. I am an RN, with chronic pain from an injury, and I am curious about others in pain, too- I fear that some here need to STILL chase a new diagnosis of their problems, as I KNOW firsthand that SO many mistakes happen in the medical profession! -RSD, but WHY? Ask! It's called 'medical practice' for a reason! Are you able to elevate your husband's leg to a height over his heart? Have him lay on the sofa with his left leg to the inside, against the back, and place pillows/folded blankets enough under it so that its comfortably propped higher than his heart?! He will not (nor will anyone else) love having to lay around. BUT, If it helps decrease the swelling and therefore the pain, and gives the tissue and maybe those achingly slow-to-regenerate nerves a chance to begin healing, it may be worth a movie or a book while lying on the sofa two times a day. Swelling is always, to some degree, gravity-influenced. If he has great circulation in his left leg and foot, he will do a little better than if he has slower circulation, when not elevated. He needs to at least do flexion and extension exercises with his foot, or eventually lose some of the function therein. Never massage a leg. If he still has insurance, DONT give that up for a 'settlement'. I did, because I had big bills facing me when I couldn't work any more, and I hated not being able to pay them, but now I wish I hadn't. NO insurance sucks. Don't give it up until he's able to work again. Also, GO to www.abms.org , to see if his doctor is trained for caring for your husband's needs, and if he hasn't had 'extra' training for RSD or for neurological disorders/injury, or whatever his diagnosis is, find a specialist- research him/her before the switch, and even if you have to pay $100.00 for an office visit, interview the doctor first! It can be a precious money-and-life-saver if you find out if you relate to him/her! Be proactive in choosing someone to take care of you/your spouse. I saw a TV show yesterday on a medical channel about a doctor who lost her husband's life to inept medical care from members of her own medical community. Laura Nathanson, MD, wrote a book titled "What You Don't Know Can Kill You". I haven't read it yet but I am going to. Its about making SURE you are the one in charge of your health care, and how to go about doing that, as well as about her own story I just mentioned. We all need to be our own advocate! Don't take what any medical pro tells you at face value, if it doesn't make perfect sense to you. Ask for an explanation. I worked 15 years as a medical/surgical/orthopedic RN, in 2 busy hospitals. I KNOW there is a huge need for us all to really know our stuff! I saw many, many times where the patient had the worst doc in the area, and believed every word of what s/he breathed. I have placed my practice on the line several times to whisper quietly to a patient's family member to "get another doc". I have saved several lives doing so. Consider this my whisper to you- research your doc, research your husband's injury and expected outcome vs the actual one, and become very informed about the 'normal' working of the involved limb/ body part... it will only help you both. Maybe it will be the ONLY thing that will help you. Put yourself in charge with being informed! If you don't know where to begin, go to the local college's bookstore, and buy an anatomy coloring book- from the nursing curriculum. Learn the body parts of the area of concern, then ask a librarian to recommend a book to teach you about how that body part works. It doesn't have to be expensive. Learn! Get a full copy of your spouse's chart, if spouse is OK with it, and read it! Its worth the copy-fee. You each have the right to get a CD of all MRIs or CT scans, from the place you had them done, usually for free, and take it home to look at it on your own computer. You have the right to ask questions. Do it. GOD bless you both!

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