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Please, help me understand!
6 Replies
PeteJess - October 4

Greetings,

I have recently become involved with someone who suffers from Fibromyalgia. Although she is a very strong person and seems to be coping very well with it, I know that she is sugar-coating the details on what she goes through in order for me not to stress about it. I'm afraid that if I probe too much, I may push her away so I am here seeking all the information I can get. Her parents seem extremely over-protective of her compared to their other daughters, possibly because of her condition and its getting in the way of us being able to enjoy each others company. We are getting quite serious and if I'm going to be with this girl, I want to understand this condition as best I can to help her if needed while at the same time, prove to the parents that she is in good hands when she is out and about with me.

She suffers from Chronic Fatigue Syndrome and Widespread Pain. Her basic explanation of all this is that, firstly she cannot over work herself because of the CFS which is easy to make sense of, but also alot of sensations that she feels are misinterpreted at a nervous system level and are translated as pain. She tells me that the pain occurs mostly in her legs.

My questions are (while keeping in mind that the circumstances may be different from case to case)-

What degrees of pressure are likely to cause her discomfort? For example, if I simply place my hand on her thigh, is that likely to hurt? Is there a difference between a soft touch and a poke, for example, that wouldn't normally hurt?

Do symptoms "appear and disappear"? I am wondering if it is similar in any way to the skin condition that I will have for the rest of my life, although I havent had any occurances for quite some time. I guess my question here is, is there a chance that over time, she will not experience symptoms any longer or at least to a minimal degree?

The part I read regarding memory loss seems to be a tad ambiguous. I have experienced this with her only on one occasion where she knew a certain discussion took place, but had no idea what it was about. Is this something that can become worse as time progresses? Is there a longest time period recorded that a person cannot recall?

I have many more questions swimming around my head but I think this is enough for now. If possible, can someone please also correct my basic understanding of the condition if I have stated it incorrectly above and maybe provide a little more information based on personal experience if you dont mind sharing. I am hoping to get a grasp of the overall picture of what happens to her and what I need to do in order to accomodate her needs before I research more specific topics.

Sorry for the long read and thanks in advance for any help.

Pete

 

Robin1237 - October 4

Pete, it's my opinion that fibromyalgia is actually Lyme disease, a bacterial infection usually transmitted by an infected tick bite. The symptoms you mention here are the same as Lyme disease symptoms. Go read at www.lymenet.org/flashDiscussion/MedicalQuestions and see what you think. The folks there can help you with questions, referrals, etc.

 

megh - October 4

I think the best thing a family member can do is be supportive and hang in there with her

 

Gavin - October 15

Pete on very late at night here but think I can provide you with some answers. will get back to you ASAP. You are on the right track, opening the lines of communication as you say are going to be more important. Chat soon, Chin up :) Gavin

 

Gabbie - October 16

It sounds as though you have already obtained important information about fibro. I'm assuming that your girlfriend has been diagnosed (by a doctor) so it is safe to say that she has been tested for lyme (that's part of the blood workup). Robin 1237 has posted in several places about lyme and I'm sure she means well, but since your girlfriend was diagosed with fibro, I think you need to put your energy into learning about that. There are many symptoms of fibro but if you read through the posts here and also other sites that you can find on the web, you will certainly gain a better understanding of what we are going through. You also need to remember that there are various degrees of pain, more for some and less for others. You said your relationship is becoming serious, so my best advice to you would be to love her for who she is, be as supportive as she needs/wants you to be and always remember that although she may look just fine, she could be experiencing one of the many symptoms that come with this problem. I wish you all the best.

 

JoniB - October 17

Here is a list I wrote for my Dr. & SSD attorney: Symptoms:

Chronic fatigue, anxiety disorder, depression, fibromyalgia, chronic myofacial pain syndrome, muscle cramps, spasms & twitching , all over body pain, pain in joints, neck, TMJ, shoulders, chest, heels of my feet , legs, swelling in ankles & hands, headaches, panic attacks and asthma, brain fog/memory problems, lack of concentration/focus, IBS, frequent urination, numbness in fingers, insomnia, hot flashes, vertigo/dizziness, loss of strength, skin tenderness, and constant pain



How has fibro affected your life?

It affects everyday, can't walk far or downstairs/upstairs well, tired all of the time, medication makes me feel dreadful. I went from being a salon owner/operator to not working at all. I was bedridden for over 6 months and have been unemployed since Dec. 2004. I could not work a regular job now. I am not active anymore and the slightest things wear me out. The pain is very intense, I have to plan my activities very carefully and no longer have the freedom to be spontaneous. It has affected all of my relationships negatively because people just don't understand. I have to make sure I get enough rest and I can't handle working full time. Unable to do daily tasks that I want to and once did & unable to do them as effectively as previously did; always feeling tired and in pain; feel as though my illness has affected the lives of my family; guilt for not being able to do everything that I would like to do with my daughter and son. Hate always telling children I'm too tired to do that today. Guilt over family obligations not being met. I can no longer multi-task. The pain is intense and it burns and aches. It feels like I've been run over by a large truck. I don't have a life anymore. I stay in bed all the time and I only leave my home to go to the doctors, pick up some groceries and attend a few of my kids’ activities. Severely depressed because of lack of energy and pain.



What makes you feel better?

Rest, but even that hurts at times, pain pills, muscle relaxers, anti-depressants, anti-anxiety medication, deep tissue massage, hot baths and heating pads will provide some relief for the pain; when the pain gets real bad I find I sleep a LOT. But nothing yet has really helped



What makes symptoms worse?

physical and mental stress, weather changes: damp, cold, and rainy weather; winter months being the hardest, very hot and humid weather; exercise, sitting for long periods, driving, certain foods, alcohol, a bad night's sleep or little sleep seems to be worse.

Fibromyalgia will not shorten life span. A good support system with Dr.'s, family, friends does help!

 

Robin1237 - October 20

Well. I'm back. I'm more than well-meaning -- I'm trying tro get you guys to realize something -- that everything you're describing is Lyme symptoms. from a bacterial infection! Please, go read at http://flash.lymenet.org -- there's lots of discussion going on 24/7 about every one of the symptoms you all are describing here! JoniB, your entire list is Lyme symptoms. People get antibiotics usually first, for the bacterial infection. You will need a Lyme-literate physician to work with. The folks at lymenet can refer you to one in your area.

 

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