Category: Health and Wellness
I suffer from some chronic medical conditions and have done so for the past many decades. I work at a sedentary job and first noticed tightening of musculature which I attributed to sitting all day with little physical activity after work. I also suffer from sleep disorders, some of which have been corrected with medication. I can now sleep fairly well at night, but I still have terrible problems with daytime drowsiness two or three times during the day. I always considered the muscle pain and the sleep problems to be separate issues, but now I'm not sure they're not inter-related.
The other evening I was just goofing around on wikipedia, going from one link in an article to another, and I wound up on a page for fibromyalgia. I've heard of this before, obviously, but since it was a syndrome that afflicted more females than males I really didn't pay it any mind, but I decided to read through the article and was shocked by what I read.
It talked about the chronic pain not necessarily being related to muscles, but to "connective tissues", something which I've been curious about since all of my tightness didn't seem to me to be related to solely musculature. It also talked about sleep disorders and a "fibro-fog" kind of altered-consciousness state. While this isn't what I think I go through (mine seems more like involuntarily dozing off), it did seem close enough to actually make me sit up and take notice.
I'm considering a trip to the doctor, but I'm not sure how much a doctor would appreciate me going to see him after trying to diagnose myself, so to speak, and am worried that all he'll prescribe is physical therapy, and because transportation is a major issue to me due to total blindness and a hearing loss on top of that, I'm a little reluctant.
I try to stretch all the time, everything from the muscles in my face to the ones in my neck, back, hips, legs and even the soles of my feet, but any relief is very minuscule and slow to come. I carry on, though, because I figure that doing something is better than doing nothing.
So, here's my question. Are there any fibromyalgia sufferers out there who can relate and who might have some suggestions on how to pursue overcoming this? It's very hard to explain to people because they just think I'm lazy because of the daytime somnolence or don't think I'm exercising enough because of the lack of progress in getting myself stretched out. Are there any techniques you might use which you've found particularly helpful? Would medication be an option? I'm not thrilled about using meds, but at this point I'd try anything. Thanks for reading and I hope to hear some of your thoughts.
Since transportation is a problem, perhaps calling your doctor's office and asking the receptionist to have the doctor call you back at a time when he or she has some time to talk would be a good idea. Tell the receptionist to let the doctor know that you want to know mor about fibromyalgia so the doctor can do some research before calling you back. You might also do some online research yourself to see if there is a national organization that you can call to find out more and also find out if there are doctors in your area who specialize in treating this condition. I used to have a coworker who suffered from this, and she was on medication that seemed to work pretty well for her. But I've also heard that the side effects from the medication can be worse than the pain from the condition itself. So doing as much research as possible is a good idea.
The disorder is literally nonexistent. It is a term which is given when the body is not working how its supposed to, and the doctors can't find a waay to get rid of it. They give you some pills, and everything is fine, and tell you that you have this strange disease. It is literally a plasebo term.
This is not to say that there is nothing wrong with you. There very well might be, or it might be that you have sore muscles. Try running, or better yet, swimming, great for sore muscles, and its fun. As for sleep, that could be something entirely different.
The point is, there is no such thing as fibromyalgia. Its a lot like the vaccine scare, medical crockery that got out of hand.
I am a massage therapist and have many clients with fibro. Alite massage can give you relief but if you can't afford to see a massage therapist or transportation is a issue, you can do it your self. Google massage and fibromyalgia and their are self techniques that may help.
Another thing you might want to consider getting for yourself is one of those massage heating pads that you put in a chair It plugs into the wall and there's a remote you can use to control the massage and heat. Very nice to have and I think it costs about $75.
Swimming and running aren't fun if it hurts to even move, as it can be for me. I totally believe there is such a thing as fibromyalgia. The sleep thing could be part of it also, as well as all the other things you mentioned. There is a pressure point test that can be done where certain points on your body are pressed to see if they trigger pain. Keep researching, and when you phone the surgery, say that since they aren't having much luck finding out what's wrong, you did a bit of research yourself. That might be a way to lead in. HTH.
PS Welcome to the club for undiagnosed chronic pain sufferers.
hi there and i am a suffer from fibromyligia though the label that is also given is chronic pain disorder and fatigue, there are medications that can be taken but your pain doesn't disappear and it is a real condition, its not some thing that is fictional though medical professionals do have a hard time diagnosing it but i would recommend you visit your gp and tell them your concerns and they will be able to send you to a specialist and don't worry its not in your head like some would think it is actual real phyiscal pain.
I'd be interested to hear how you get along with sorting things out
Nice to know that SilverLightning, our resident doctor, is so self-assured, and of course, well enough himself, to discount whatever he feels like!
For those of you who may be interested in science, I refer you to one of the latest studies done on fibromyalgia:
http://www.intidyn.com/Newsroom/article-0009.html
For more on diagnostic criteria, check here:
http://arthritis.about.com/od/arthqa/f/fmsdiagnosis.htm
Good luck.
My cousin has this. She is more of a religious spiritual type so sometimes getting the straight answer takes some mental gymnastics.
I do know she had trouble with even going up and down stairs for awhile. But I am guessing it must be good days and bad days, because her spiritual type of way to tell the rest of us she's maybe in trouble is to post about gratitude for it and its higher purpose. I take from that that she really suffers quite a bit.
And I do know people have struggled with being believed, or have been called lazy for it. Something I can never do, since I have the privilege of being able to work out on a hard cross-training regimen nearly every day and enjoy the paleo lifestyle. It's easy for us who are fit to overlook these kinds of things. But you can see it in them, they're moving slow, or like my daughter's friend's mom, they're just sounding completely depressed all the time as though they were perpetually popping a bad batch of downers. I for one am just mainly willing to pitch in and help out with the physical things they need, though I know the emotional stuff is pretty tough on them too.
yes it can get you down and having a good sense of humor helps but your right that the condition is not believed by others but just know you have people on here who will understand how it feels and can help you emotionally or physically or in any way possible, smiles.
Your also right there are days that are better than others
Depression is not a symptom of Fibromyalgia, but very often it does come hand in hand.
If you think of what a healthy person can do, and then think of what you would be achieving if you were at, say even sixty percent capacity, you would notice a huge difference. It would, more often than not, bother you a lot that you can't achieve what others can. Then imagine taking your capacity down to fifty percent, even more guilt, anger and grief. Grief for what you once had, but no longer do. Some people with Fibromyalgia and ME/CFS run as ten percent capacity. Would you know what to think then? Would you know what you were capable of off of the top of your head? I am thinking not. This coupled with the reality that many people see such illnesses as non-existent, and would it be a surprise that you may feel depressed do you think? Don't misread me, I am not meaning to sound patronising. Acceptance of a situation can take years in such cases, and even when it comes, it still has it's own pit falls with it. Acceptance doesn't in any way mean one hundred percent acceptance. There may well still be days that you truly hate yourself and your situation, and that could play out as depression, rage and self-loathing. I speak from experience. That is not to say that everyone's situations are the same.
Likewise with medication, what works for one person, may make another worse. Even though the above study looks encouraging, a lot more still needs to be done to prove this theory.
i can relate to what you have said here and what a good way you have put it and i myself have had a hard time accepting the condition and people don't realise i have it because i do a lot of things people with fibro might not do though with mine i find i'm fatigued a lot and i agree that depression is not part of the condition but you are able to get it because of having fibromyligia and i said to my family "would you be happy if you were in pain all the time"?
I've been to many doctor's and specialists but still they have a hard time diagnosing the condition and the label that i've been given is Chronic pain disorder and fatigue but i think a good method to have is having a sense of humor
It amuses me how people automatically think there's nothing wrong because when they see you, you look ok. Of course you look ok, coz if you didn't, you wouldn't be seeing them! I look ok because this is a good day, a better than good day. On a bad day, I don't get out of bed, so seeing people isn't up there on my priority list.
yeah i agree but it makes it harder for the professionals to make a proper diagonises especialy when you look normal on the outside but don't feel the same inside your body, smiles.
It wouldn't be hard for them if they actually agreed to follow diagnostic procedures put in place for them, but like silverlightning, most of them are so far up their own asses, that because they believe it doesn't exist, it doesn't matter what anyone else thinks.
well it isn't easy for them because they don't know much about the condition and not enough professionals have the knowledge about the condition either.
Also each patient is different and of course they have to go by the medical history you have and then trying to match the symptoms to the right condition can get them confused like for me each time I saw a doctor and would not only have 1 symptom but different symptoms that wouldn't even relate to the one i'd had previously
I help run my local support group for those with ME/CFS/fibromyalgia. We have a twitter feed which is full of latest news. If anyone's interested in learning more, follow @croydonme on twitter.
cool and what a nice thing to do, smiles.
that's right; you mentioned that.
woops sorry; appeared I posted to the wrong board! Lol
woops lol its alright, smiles.
Anything you guys put out there helps friends, family and loved ones of people suffering with this condition. So although you get ridiculed for it in daily life, I'm glad to see this and any practical ways you all can be helped.
i agree and yes the more help people can get the better as well as having knowledge about the condition would be helpful for family and friends or those whom are in your life every day.
Wondering if anyone would still check this topic, but just in case:
I would be really interested to know how many people with ME/CFS/fibro myalgia have had thyroid and adrenal tests?
I got on to this idea late last year, and since doing so, have discovered that as well as my thyroid being under-active, my adrenal glands are not working well either. Cortisole salivery test would assess that if you were interested. The treatment: hydrocortisone and/or bovine or porcine desiccated adrenal gland tablets. Sounds tons worse than it is.
Also, make sure that your vit D3, Vit B12, magnesium, calcium, iron, zinc and pholate are in optimal range, and make sure you get plenty of vit C as well.
If anyone wants to know more, or needs help with it all, message me.
I know not everything works the same for everyone, but definitely worth looking in to. I'm feeling tons better and doing loads more, something I thought would never happen.
wow that is interesting and I've had my thyroid tested many of times when having blood work done as they thought I might have an issue with it but tests always came back clear though I did find out when in treatment at a hospital that I was low in vitamin d and take supplements for it which in some ways helps but still have issues with my pain, I take pain relief but it doesn't give me enough relief which is frustrating and my general practitioner's have not changed it much which has been disappointing on my part.