Tuesday, June 1, 2010

CFS and Migraines

How was everyones Holiday weekend? Did anyone do anything special or fun? A BBQ perhaps? Whatever you did I hope you or your loved one was pain-free. On Friday night one of our longtime friends was having a going away party. It was at a restaurant which meant I probably wasn't going to be able to go. Why you ask? I can't sit for even 2 minutes before I get excruciating pain and pressure in my bladder and vulva area. So this limits me to everything basically. That's why I am either lying down in bed or on the couch. Do you have this same problem? Needless to say I was bummed that I couldn't go to dinner. Do you miss out on social events too? It's hard isn't it? You already are suffering from chronic pain and other problems we shouldn't have to deal with this too! I get so angry sometimes because I am so limitled from this disease. To tell the truth I get angry at myself because if I didn't have IC these things wouldn't happen, but my husband is always right there to tell me that I don't have control over IC and I didn't do this to myself! So if you ever feel the same way sometimes remember that. Even if you can't go out and be social are your friends and family still close with you? I feel like this disease is very lonely! You know that's why they call it the invisible disease. They compare what we are going through to cancer but because our hair isn't falling out, people have heard and understood cancer vs IC, etc they are less likely to be there for us.

Even if I didn't get the horrible pain with sitting I wouldn't have felt good enough to go to the dinner on Friday. This weekend I have a huge increase in my CFS or Chronic Fatigue Syndrome symptoms. For so many years I had no idea I had CFS or that it goes hand-in-hand with IC. I would complain all the time that my muscles hurt so bad like I'd been run over by a truck you know the way you feel when you have the flu? I thought I was crazy because I literally felt like this all the time even when I appeared fine and healthy. This is one of the key symptoms of CFS. Lately I'm always taking a flashlight and checking my throat in the mirror. My throat doesn't look red and I shouldn't be sick anymore because I had my tonsils taken out 2 years ago. Guess what? Having a sore throat is another key symptom of CFS. Of course the main symptom the one it gets it's name from is fatigue. The other key symptoms are difficulties with memory or concentration, problems with sleep, joint pain without redness or swelling, headaches, and tender lymph nodes. If you have a couple of these symptoms or more and haven't been diagnosed with CFS it might be a good idea to talk to your doctor about it the next time you see he/she.

Along with the increased pain in my muscles all over my body this weekend last night I got a severe migraine. I almost threw up on multiple occasions either from sound or light. We turned every light off and of course at the onset of the headache I took my migraine medication and eventually took a couple hour nap. When I woke up the migraine was still present. It wasn't as strong but I was still affected by it. I had to wear my sunglasses at night in the house and ask my husband to talk very quietly. Today I still have a very bad headache and the light and sound are still affecting me. I also feel a little nauseated. If you didn't know migraines are also caused by our IC. I hope that none of you have to suffer from these but if you do I'm sorry.

I wish everyone a good week and again let's hope for that IC cure! And I want to hear from you about all my questions above! <3


Dr Nicholas E. said...

If you're diagnosed with severe migraine, one thing that might have caused it is due to lack of sleep. Our body releases a chemical called Seratonin which rely on the amount of sleep. Insufficient Seratonin is the main cause why migraine attacks.

stringsofme said...

I definitely have lack of sleep. For example last night well technically this morning I was still awake when my husband's alarm went off at 5:30am. This is an ongoing thing for me and it's really starting to wear on me. Again last night I got another migraine. I was seeing bright tiny flashes of light with my migraine mostly in my peripheral and/or straight on. I don't know what to do anymore. I can't sleep because my body is in so much pain all night and I'm also getting up several times to go to the bathroom. Any tips or suggestions? Thank you!


Hi, I am Josselyne I am french I live just near Paris - I was diagnosed in 1998. I understand you perfectly .. I do not speak good English but I try to be understood. Maybe we can talk to both about Ic and our health.
You have symptoms similar to me but I was implanted in 2002 with the ITREL3 Medtronic - a sacral nerve stimulation, and I have no more urinary frequency as in the past- I can stay more than three hours without going to the bathroom .. nevertheless I am always painful and tired . I take opioids for my pains, twice by days and prozac and a treatment for my thyroid, when I am too much bad I take also rivotryl that helps me for a while... generaly I feel really better in the evening - between 11 and 3 in the night and I can have some good time with my napkins - since I am sick I collect napkins , and make some creations with -
I have only slept 3 hours and now I am very tired and painful..
I'm not well and I'm going to bed to have a rest .. It is 1:35 p.m. in France. Maybe we can talk at once again ..if you want :o) take care . Josse

life turned upside down said...

I sure feel your pain, my stepdaughter is graduating one the 19th. She is having her party on Saturday, she lives over three hours away. I am unable to attend either event. This makes me upset with me and sad at the same time. Why is it that we have to suffer the pain, not eating the foods we like, and losing touch with friends and family. I know that all of us have some story. I am so envious of all the people that have IC and still can work. I can't stand the thought of having to get in the car to go to the doctors, and that is a must. I feel like I have been given a life sentence for a crime that I have never committed. I know that we are sup post to be positive it is really hard when you are in pain day in and day out, pain medication only puts it at a dull roar. I hope that everyone that can do some of their normal life will always be able to. No one should ever have to be shut in their own house.
I am thankful to you for being so open about everything. It does help me to know that their are others that can't get out and do the things they use to do. I do feel so trapped!!!!

stringsofme said...

Hi Josselyne~ How has your pain been lately? That's cute that you collect and make things with napkins. I keep busy with crochet. It's my way of helping pass the time by and keep my mind off of the pain.

Hi Tyconda~ I know what you mean about the life sentence part. Have you read my new post? I kind of touched on the topic of not feeling normal. It's really hard for us because we are trying to deal with this horrible disease and then we have people judging us and not being there for us which only make things worse. Stress is a huge trigger for flare ups and this whole viscious cycle sends us on a downward spiral. Try to hang in there!

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