I am worried, I have done a lot of research on fibromyalgia/CFS combo and know it is not terminal, but I read where so many have you have a worsening of your disease. Is true or is it just because of other diseases you have with yours
Hey Sooner...STOP READING...=:) I say this in jest but with some seriousness. Doing research on anything medical is bound to give conflicting answers. You know how studies are. Everyone is different. There is no answer, really. I have had juvenile Rheumatoid Arthritis since birth. I have had bad years and long stretches of good. I am learning one way to deal with all of this is to try and live in the day. It is hard. If I have a bad day it is easy to think the next will be worse, but perhaps it will not. I TRY and not give into the fear and if i can stay in the day and realize that all we have is today....then the stress seems manageable.
Hope this helps...Maria
Well, I started out with just the SI joint and heel pain. It progressed to elbow and knee pain. Then fingers. Then back and shoulders. Jaws. Fatigue. Dizziness. So yes, for me it seems to be the illness that just keeps on giving...and giving...
But I hope that it doesn't work that way for you. I'm not sure it that's a given that fibro progresses or it it's is just the way it is for some of us.
I hope so too, ariestlt. That would be awesome. Never say never. Who knows what the medical world may offer in the coming years?
Petunia Girl are you like me and fibro and CFS are your only diagnosis? What is the SI joint pain? I have the heel pains but had no idea it was fibro, although it comes and goes when it's there I almost walk on tip toes. Thanks for answering. I'm not going in with the intention I will get worse, kind of just trying to get a picture.
Hi Maria,it's funny, I was a nurse for 24 years and that was what we always told our patient...don't read on the side effects, or what can happen and then once it happens to me all of that flies out the window. Thanks for the information and giving me a laugh.
Soonersmile, I'm just fibro although I share many, many of the traits of CFS. SI joint pain is pain that feels like it is in the top of my buttock, close to the back. There's a little pressure point in the buttock, about an inch from the back, and the pain there is KiLLER. The pain radiates across the buttock and over to the side. Also goes down the buttock. The pain originates from my back and is deferred to that joint, I guess. It feels like someone took a rubber band and put it inside of my left buttock and pulled it as tight as they could, against my muscle. It also feels like someone is grinding their knuckles into my buttock. Does this sound familiar to you at all?
I THINK the heel pain is fibro related. You must forgive me, I also read the Psoriatic Arthritis site (thought I had it for a while) and heel pain like ours goes along with it. I THINK it also goes with fibro.
Fibro folks, you want to weigh in on whether or not you've got heel pain too?
Sounds like plantars fascia or bone spurs in your case. I was able to get an orthotic insert made for about $150 and it really, REALLY helped with that pain. Like you, I was only comfy on tip toe. Was worst when I first got up and out of bed. I waddled like a duck, trying to get the stiffness and pain out of the heel.
Wow are we twins or what? The heel pain will be really bad for a while and then one day it's not there...until it shows up again. I have a hip pain similar to yours it hurts so bad comes from the base of my back over my rt buttocks, and down the side/back of my leg, sometimes all the way down to my knee, sometimes ankle even. If I lay on my back and try to lift my hips the pain becomes unbearable. They did spinal epidurals, it took three times and after the third it worked, well for 9 weeks anyway. It has started back now. The pain is not a nerve pain.
All I can say is, I'm so, so sorry! I KNOW how awful that pain is in your back and hip. Where did the pain originally start? Mine was the SI joint but has spread up to the neck. Doc thinks it could be muscles reacting to the SI joint. I'm wondering if that could be the case with you. Awful when it travels down your leg. Mine did briefly - that hurts!
Mine isn't nerve pain either, doc says its arthritis in the back, which is why they're gonna try the cautherization of the nerves. I guess it can deaden the pain for a while until the nerves start to regrow. Then you have to go back and have it done again.
That heel pain was unbearable! I don't think mine ever abated, as yours does, so not completely sure if it's the same source of pain or not. Can you go to a podiatrist and have him check out your foot? If it's bone spurs, there are some exercises you can do to try and break them up. One was putting a can of coke on the floor and trying to roll it around under the bad heel.
I found the pain to be much, much better once I got the insert made. Might be worth your while to look into it. Made a complete difference for me, as I couldn't even walk before I got it.
Caution against podiatry. I went for heel pain and was given a shot in my heel which was the worst pain I have ever experienced. I don’t recommend this-
My chiropractor suggested freezing a bottle of water, then rolling my foot over it. Also, take a tennis ball and roll it under your foot to stretch it out.
I recently had SI joint injections, and the pain is back after three weeks. Now my entire foot goes numb below my knee and my back hurts too.
To answer the original question, I also have CFS and I find that symptoms improve for a while then get bad again.
The way my D.O/painmanagement Doc explained it was the same place the sciatic nerve runs from back through some circular thing and down you leg, there is also a muscle that runs thru. The muscle gets tight or does something and this causes the pain. It was so bad that I couldn't stand to stand for two songs in church with out it hurting so bad I had to sit down. At one point I was using a cane. I'm not too hot on searching out anymore docs. The dr. above decided to refer me off cause when she asked me to describe where the fibro pain was and what it felt like, I started off with the aching pain in my ankles and legs and she said that's not fibro it's arthritis I'm referring you to a rheumy, well he gave me a hand out on fibro, and then proceeded to test me for everything under the sun including celiac disease. I decided since everything any doc tests me for turns back to fibro that I was through with testing. I will look into the insert. Thanks for so much information. and validation too.
I'm sorry Petunia Girl my reply and thanks was for both you and Sunflower 72 I forgot that each response was individual. I will try the tennis ball as the stretching I do with all my other muscles really seems to help.
Yeah- they give us meds that cause weight gain, then make derogatory comments about our weight. But if we try to increase our exercise, we end up flaring our fibromyalgia and then they increase our meds again to try and get rid of the fatigue and pain. It goes on and on.
Where are you from, ariestlt? Maybe we ARE related. My family is HUGE.
The term "sciatica" has been thrown into my chart too for my SI joint pain. Now docs are saying it's down to wear and tear "osteo" arthritis. I'm wondering if that might be the case for you too, originating in your back and then radiating downwards? Hence, I'm wondering if you might benefit from the procedure I'm going to have done where they cauterize some nerves in the back? It might be worth your while to ask about. Sorry if I already suggested this to you and you've already answered it, as I'm answering this post starting from the last post. (I oftentimes do that because it forces me to concentrate more thoroughly.)
I agree - shots in the heel are the WORST (except maybe shots in the roof of your mouth.)
Yeah, the freezing bottle of water is just like the coke can exercise. I was thinking "a cold can of coke" but it's been so long that I spoke to the doc that I wasn't sure if I was right or not.
SI joint injections don't seem to work long for anyone who gets them. I wonder if the injections might have injured a nerve, with what you're describing, Sunny. Or could be right back to the initial back injury. I get the numb foot sometimes too, briefly. I think the nerve is being pinched.
Sunny, I'm REALLY sorry about the CFS dx. I've read discussions from CFS people and they feel even worse than fibro people. My heart goes out to you.
It really sounds like you could benefit from the special inserts, if you can afford them. i had the same situation as you had. Had one of the shots. Didn't help. Got the inserts - heaven! Still have problems with my feet but NOTHING like before. Those stupid foam inserts really give you back a lot of mobility and take away the worst of the pain. Worth every penny spent. In fact, i think I need new ones as mine are 5 years old and i think you're only supposed to use them for a year or two.
Petunia,
I am brain fried. Given what I have mentioned about my SI joint which type of doctor should I go to?
Thanks,
Sunny
I love it, the Physician's assistant advising the nurse! You two smart cookies could teach us so very much, hope that you are both having a good, pain free night, with sound sleep and sweet dreams of handsome, gentle men, well, lets make 'em rich too!
That should have been good for a giggle! HA!
Hugs,
SK
That SI joint pain sounds very familiar to me, Petunia! Surely hope yours is not the same as mine!