I never know quite how to start a post about Fibromyalgia and Chronic Fatigue Syndrome… There are so many things that go through my mind that I can’t always organize them into anything that I think is interesting or informative. Of course, there are also times that my brain fog is so bad that it’s not possible to post anything at all. Those days are always rough… The last 24 hours or so have been rough for a different reason. A burning, tingling, roving pain reason.
Since my diagnoses I’ve spent more than a bit of time researching clinical studies, doctor’s websites and the blog posts of other people like me. With both CFS and Fibro there are many symptoms that I’ve never experienced. One of the weird quirks of each illness is the symptom set is different for each person. There’s a certain set of criteria that each patient must fall within, but the rest of the symptoms vary from person to person. I’m so thankful that other people share their thoughts and insights – it’s reassuring to know I’m not losing my mind – but oddly enough, it creates strain at home. Has anyone else experienced that? Earlier this evening I was talking to my husband about a new kind of pain that’s been bothering me in the last 24 hours. He asked me if I had ever considered whether or not reading information from other people ever ‘encouraged’ me toward adding new symptoms to my list… A very legitimate question. It does happen and I can’t say I haven’t done it at some point. With all of the information available on the internet – good and bad – it’s easy to become convinced that health problems are much worse than they actually are. Researching a set of symptoms can return results ranging from the common cold to rare, untreatable diseases. I try not to do that… If something is wrong with my health, I try to seek care and advice from a healthcare professional. However, sometimes with CFS and Fibro it isn’t that easy. There isn’t a doctor in my area that specializes in either of my conditions and the field is still undecided about what causes either illness and what courses of treatment work best. The combination can bring about less than satisfactory results when I visit my doctor’s office. Although I trust and respect him, there are days I’m just not up to the stress of not having concrete answers and solutions.
My husband does his best to understand all that and tries to provide support any way he knows how. Problems only arise when I need one kind of support and he tries to provide another. Asking if I’m adding symptoms due to research was his gentle reminder of the pitfalls of relying on so much outside information… I’m grateful he’s looking out for me, but it’s not easy conveying how helpful it is to put a name or description to a symptom that I thought might only exist in my head. Being able to breathe a sigh of relief because I’m not, in fact, going crazy and there are other people who understand the things that are happening to me. Even the things I haven’t spoken aloud to anyone. I’m doing my best to try to communicate with him that part of having ‘invisible’ conditions means that I need positive, uplifting support no matter what. On the flip side – I hope that I’m appreciative enough of the effort that he’s making. My health concerns him too, and I know he’s just worried and trying to help. Living with this is a strain on both of us and I hope that we can continue to refine our communication styles and grow stronger together… Even though he won’t ever fully understand what I’m going through, I can’t imagine dealing with this without him! We may not always see eye to eye and I know he can’t read my mind and always anticipate what I need, but I’m blessed to have someone who loves me and tries to do what he can to bring me peace, hold my hand and walk by my side. Even in the midst of all this pain and confusion, I’m so very blessed… 🙂
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My hubby is one of those super understanding, supportive types that accepts this disease I have called fibro. He’s done more research than I have and is aways asking me about my symptoms. In the past year (year 9 of Fibro) I started having new symptoms and just kept them to myself. I get tired of complaining all the time. This new symptom was not bad it was just annoying. After weeks of it, I finally told my doctor and he ran tests. We discovered the symptom is just another of the fibro symptoms BUT, with the testing, we also found out that my kidneys are failing and that I have arterial sclerosis in my legs. What I’m saying is to listen to your body and your instincts. The new symptoms might be something you DO have control over and can be treated for. I know you feel like a hypochondriac but you aren’t. You have an illness that is mostly unknown, has no cure and treatments that only control SOME of the symptoms. It’s NOT all in your head. Your symptoms are real no matter what your hubby or anyone else says. My mother in law thinks I’m just a lazy good for naught. She’s even told my hubby to leave me. Real helpful huh?
Thank you for such a wonderful and supportive comment!! And how wonderful to have such an amazing, supportive husband!
It’s always nice to know that other people understand what it’s like to keep things in your head for whatever reasons. I feel the same way sometimes about not wanting to complain too much and that often leads to silence. This is one of the first ‘new’ symptoms I’ve had in quite a while and I actually promised hubby last night that I would have my doctor at least check it out. It really is important (no matter what condition someone has) not to self-diagnose when a seemingly innocuous symptom could be masking something much more complicated. Your story really drives that point home! I’m so glad you got checked out and found out what else was going on with your body… although I’m so sorry to hear about the additional burdens your body is going through. I wish all the best for you and your family!!
You and your husband make a cute couple! It’s great that you were able to accept his question without getting really mad! It’s easy to get defensive about all these crazy symptoms. And very hard to determine which ones we should worry about. I ignored a pain in my elbow for weeks, thinking it was just a tender point being tender. But now it’s much worse. I can barely use my arm and I couldn’t sleep last night because it hurt so bad. It’s definitely something beyond fibro and it would probably be healed by now if I hadn’t ignored it, assuming it was a fibro thing. I hope you get some relief from your new symptom.
I completely understand, Trisha! It is frustrating to run to the doctor with every little thing, but it’s also scary to wait something out only to discover it’s not related or getting worse. I’ve gone down both roads. *sigh* I’m so sorry to hear that your elbow isn’t doing better and hope you figure out what’s wrong and find some relief soon! Take care, Trisha!! And thanks for stopping by… : )
I would like to honour you with the Fibro Fighter Award (http://fibromodem.wordpress.com/the-fibro-fighter-award/).
Congratulations! Please feel free to recommend other bloggers whom you think worthy of this tribute.
Thank you so much! It seems I’m always learning new things about Fibro, so I’m happy to try to educate others as I try to educate myself. If someone benefits from anything I share then the transparency of blogging about this condition is definitely worth it. 🙂
There are several other bloggers that are certainly worthy of such a tribute – I’ll have to pass those along! 🙂
There’s certainly something to be said for evidence that you’re not just going crazy. 🙂
I struggle with Restless Leg Syndrome fairly severely. I’ve often wondered if there wasn’t also something else along with it. I’ve read that Fibromyalgia can go hand in hand with RLS. Thanks for your sharing and vulnerability.
Thank you! I’m sorry to hear that you struggle with RLS – that must be very difficult… If you are dealing with other pain, ‘symptoms’ or strange health issues, I would definitely recommend talking to your doctor about fibro, or any other number of things that could be contributing to it! For me, writing about it sometimes helps me deal with the emotional toll it takes. Hopefully it will benefit someone else, even if it’s just so they know they’re not alone. 🙂
Thanks for stopping by!