heidiiiii Posted March 3, 2009 Share Posted March 3, 2009 You have to get over the call of Moby d***. I was a water baby all my life. Then I got too big for my britches after kids and I declared I would never wear a bathing suit *like my mother wore*. I did not step in the water for many years. Then one day I said a couple bad words to myself and got back on the proverbial horse. I love swimming. It is so good for you too. There is nothing more wonderful then getting in the cool water of the ocean on a hot day and just sitting there in the shallows as waves go by. I am afraid of PT but I am going to do it. I have to. And I will scream and hit them with my limp leg if they go too far. I will not be ashamed to say..Umm NO it hurts and I aint doing it! A little pain is okay but if they make me hurt 3x as bad as I do now, they will hear my nicely tucked away street girl come out with both barrels. Quote Link to comment Share on other sites More sharing options...
havanaholly Posted March 3, 2009 Share Posted March 3, 2009 I used to swim like a fish, and my fat ain't bouyant! I keep a PFD (personal flotation device) on whenever I step into my kayak or our canoe because if it should capsize I'm going to be busy getting it rightside up & back into it to spend all my time & energy trying to keep myself afloat. Heidi, I think you ought th have hydrotherapy for your PT. Heated pools are WONDERFUL! and those waterjets feel SO good on sore, achy-breaky muscles. Quote Link to comment Share on other sites More sharing options...
Deb Posted March 3, 2009 Author Share Posted March 3, 2009 I'm back after four days of total-body agony. I don't cry very much, but I spent a couple of days laying in bed crying and had to have Bruce help me get out of bed. Obviously something is wrong with the PT. I called my rheumatologist and in the conversation relayed back and forth thru the nurse, she said to slow down and do less with the PT. But in the course of the conversation a couple things came to light that got me to researching. One is that my pain was whole-body, not just in the areas where I'd been exercising. That means that the exercises had set off the fibromyalgia nuerotransmitters causing myofascia distress to my whole body. I asked her for pain meds and she said they won't do much good because fibro is a neurological disease and I'm already on neuroblockers. She gave me a mild pain killer to help take off the edge of the muscle pain caused by the myofascia tightening up around the muscles. (myofascia is the filmy skin surrounding muscles and fibro causes it to tighten up like a splint or a plastic casing........it kinda feels like a combination of flu-like aches and being stuffed into a space bag and having all the air sucked out till it tightens up and squeezes your whole body) Anyway, because of what she said about the delayed onset pain, I went digging around in the book that Heidi sent me and learned more about the co-existing disease of Chronic Myofascia Pain. CMP and fibro have a lot of overlapping symptoms but one of the things specific to CMP is trigger points in the muscles. Usually scar tissue from an injury, they create knots, lumps and steel bands in and around the muscle and collect all kinds of nasty debris. If there is an active trigger point in a muscle, strengthening or repetitive exercises can make it worse as well as cause the fibro to start doing it's tightening thing and can even cause permanent damage. While my dr hasn't discussed CMP with me or looked for trigger points, I'm pretty sure there's one in my lower back and one in my upper back that are both active. There's an entirely different kind of treatment for CMP trigger points and the physical therapy for them is stretching and heat as well as things like cortizone shots. Since I don't get to see my dr till the 20th to get her to diagnose the CMP trigger points and start therapy for them instead of standard lower back pain/arthritis/degenerative disc disease, I'll just have to print out what I have about the physical therapy for trigger points and take it to my PT on Friday. He's already said they don't have a regimen for fibro so this will be a learning curve. He's a good PT so I think he'll be willing to work with me on it. Interesting as well is that carpal tunnel symptoms can be caused by a CMP trigger point and I'm being treated for carpal tunnel too. If we can find and fix the trigger point, that could save me having to have surgery on my hands. It's kind of funny to have to take all this to the dr and pt since you'd think that the experts would know about it, but even the book says that doctors aren't always aware of the co-existence of fibro and CMP so I'll take an active part in my diagnosis. LOL I think that we may be on the right track, just premature in starting PT for the lower back/bone stuff before taking care of the CMP trigger points. It's just a matter of getting the sequencing right. I'm looking at this as if I were troubleshooting a computer. You gotta follow the right sequence of steps or things will break. Heated pools are WONDERFUL! and those waterjets feel SO good on sore, achy-breaky muscles. I wish that I could, but I'm sooooooooooo terrified of water that I can't get into anything bigger than a bathtub. Even a hot tub sends me into a panic. I have a serious phobia of water so pools aren't even an option. Deb Quote Link to comment Share on other sites More sharing options...
dragonlady1380 Posted March 4, 2009 Share Posted March 4, 2009 well it is 1.15am here in scotland and at 12.45pm im off to more physio yippppppeeeeeeeeeeeee not someone shoot me. im expecting the bike and the standing machine and the stretches and i wonder what will be added to it. ive had a splitting headache for 4 days because of the upstairs neighbours they have been swapping bedrooms with their daughter and it has taken them 5 days of drillling, bangging and making my windows rattle and my chandelier to shake and my dogs to start barking every time they bang. its not that he is useless at diy and isnt very handy at anything but he still tries and messes it all up u just have to look at my bathroom ceiling for proof, they had a leak so he decided to fix it and he hasnt it is now causing the ceiling to go mouldy which isnt helping my health. ill be going into physio tomorrow with earplugs in as im noise sensetive just now and with sunglasses on as the light hurts my eyes and head. ill up date u when i get back at some point. Quote Link to comment Share on other sites More sharing options...
Missymew Posted March 4, 2009 Share Posted March 4, 2009 Deb - I'm sorry you're going through this painful ordeal. I know that I stopped physio therapy (actually my doctor stopped it). Instead of slow stretches, this guy was trying to yank my shoulder into position. I've got torn ligaments - even I know that sudden movements will cause it to tear. Anyway, a cortisone shot to the shoulder did wonders for me - immediately. I still have to watch my range of motion - the doctor has warned that my shoulder is not healed - they've just reduced the inflammation. I've been enjoying over 6 months of being pain free. If the shoulder gets cold I get a deep ache in the shoulder. So, I always make sure I've got a shawl, heavy sweater or a wrap with me. Getting older is not for the feint of heart. I also share your dislike of water. I love my bath, but won't get into swimming pools or hot tubs. Too much water for me. I also hate cold or cool water. I sure sympathize with you as I hear what you're going through. Hugs -Susanne Quote Link to comment Share on other sites More sharing options...
havanaholly Posted March 4, 2009 Share Posted March 4, 2009 Deb, honey, a hydorthreapist will fit you with a PFD (personal flotation device, AKA life vest) for a pool workout... Quote Link to comment Share on other sites More sharing options...
Deb Posted March 4, 2009 Author Share Posted March 4, 2009 Anyway, a cortisone shot to the shoulder did wonders for me - immediately. The cortizone shots kinda scare me because I've heard all the horror stories of how they inject directly into bone and how painful they are. When the dr mentioned them for my hands I jerked them back and hid them under my arms. Are the shots as bad as the horror stories? I mean, if they'll help I'll do it but I keep getting a mental image of a needle as big as a jackhammer. Deb, honey, a hydorthreapist will fit you with a PFD (personal flotation device, AKA life vest) for a pool workout... I've tried the security of flotation devices and it doesn't help. Once a guy whom I loved and trusted with my life got into a pool with me, promising to keep his arms around me and we'd just stand in the water. After about two minutes I almost climbed on top of his head to get out. After dear old mom tried drowning me in the bathtub when I was a year old, I've never gotten past the panic and phobia of being in water. I can't stand it on my face either. I have to shower with my back to the spray. Deb Quote Link to comment Share on other sites More sharing options...
Missymew Posted March 4, 2009 Share Posted March 4, 2009 I'd heard horror stories about cortisone shots too. But I'd reached the point that I could hardly stand the continual pain and ache of my shoulder. You actually get three needles: one to freeze, then a deeper freeze that goes right into the bone, and then the cortisone shot. I hardly felt them. The reason that they freeze deep into the bone is that if they can actually freeze the inflammed tissue, then the cortisone will work. If you don't get relief from the freezing, then they'll let you know not to expect any pain relief when the cortisone starts to work. From the moment the (whatever kind of a doctor he was) inserted the freezing, I was pain free. They ask you to stay around for about 20 minutes and then he comes out to talk with you. He told me it would take up to 2 weeks to get full effect from the cortisone shot. Mine was immediate. If I needed a cortisone shot every week to be this free of pain - I'd go for it. I laughingly tell my husband that I could easily get hooked on this kind of pain relief. Its so much better than taking a pill pain killer where you get foggy in the head. I hate that feeling. Hugs -Susanne Quote Link to comment Share on other sites More sharing options...
havanaholly Posted March 4, 2009 Share Posted March 4, 2009 DH used to take cortisone shots to relieve the crippling pain from a heel spur, the doctor injected it into the space where the muscle and tendon fasciae contacted the spur. That lasted about six months. When he went in for his third shot DH jokingly asked the doctor about installing a port ot pump in the cortisone (since his relief was so immediate) and our old-poop doctor yelled at him that he needed to get some decent orthotics for his shoes! When we all finished laughing we went straight to the Birkenstock store and shelled out the US$$$ for a pair of footbeds that go into every pair of shoes he owns, and he hasn't had to have another cortisone shot; he loved them so well that a week later we went back to the Birkenstock store and shelled out more US$$$ and he bought me a pair, too! I understand your terror of water, Deb, I truly do, and it's too bad that you won't be able to take advantage of its healing properties (we may be twins, but I'm sure glad we didn't have the same mommas; mine was wierd enough!); hopefully between you, your neurologist & rheumatologist and PT y'all will arrive at a regimen that will actually work! Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted March 4, 2009 Share Posted March 4, 2009 I will print out that sheet for my appointment on the 12th Deb. I am a bit worried about my foot. I have a question for all of you that have had sciatica. My foot is numb and weak still. It has not changed, good or bad. Plus my foot gets really cold while the other one does not. Did you have this and how long does it last? I told this to the Neuro but I felt like he just gave me the Yada Yada Yada`s about it being sciatica and basically that is that. So Fred is coming to my rescue. See, there is only ONE Neuro practice in our area...the one I am going to. But the Neuro surgeons that used to be in that practice branched off into their own place. They only see people that need surgery. Fred is buddies with one of the really really good surgeons in that group. I am going to type out what I have and what is going on. If that surgeon says that my foot thingy is normal, then I will be okay with that and go on my merry way. Fred is going to pop into his office today and ask him for his take on it. I want to point out that I have mild pain in the center of my spine (not lower back) that was not there before. It was the spot where I heard the pop and landed in the bed for days with a bad back. I want to make sure that I am not going to do more damage to my foot/leg because I do not want this to be permanent. Quote Link to comment Share on other sites More sharing options...
justmesue Posted March 4, 2009 Share Posted March 4, 2009 I have a circulation problem that causes my feet to get numb occasionally, and they always feel cold. I was told it was unrelated to my sciatica, and that massage therapy is what I should be looking into for that. (I am, as it is covered on my health insurance at work) My sciatica is not nearly as bad as yours however. I get a few bad days of it, each month, and it's usually caused by a specific task( cleaning the baseboards on all 4's) I've done the day before at work. I was also told to quit smoking. Yes, I have a date set for that. Quote Link to comment Share on other sites More sharing options...
dragonlady1380 Posted March 4, 2009 Share Posted March 4, 2009 well im back from physio and so glad i can go back to bed. first i had the stretches then it was the machine thing to stand me up and i didnt black out this time yeahy me. then i thought it wud be the bike but noooooooo he had me at the parallel bars and had me pull myself up using my hands and arms to hold me up while he braced my legs so i cudnt fall unless my arms gave way that is. my hands r now so sore and close to blisters coz of the preasure put on them, my arms r so achey and im no good to push myself around in the wheelchair. im back on friday oh no not enough time to recover. on the bright side i can wiggle my left big toe. Quote Link to comment Share on other sites More sharing options...
Deb Posted March 4, 2009 Author Share Posted March 4, 2009 Fred is going to pop into his office today and ask him for his take on it. I want to point out that I have mild pain in the center of my spine (not lower back) that was not there before. It was the spot where I heard the pop and landed in the bed for days with a bad back. I want to make sure that I am not going to do more damage to my foot/leg because I do Yay for Fred! Honestly Heidi, the foot thing doesn't sound like sciatica to me. At least I've never heard of that symptom being related to sciatica before. I'm glad that Fred is looking into it for you with the neurosurgeon because it's just not typical of sciatica. Sounds more like a pinched nerve or a circulatory problem. Keep us posted on what you find out. Deb Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted March 4, 2009 Share Posted March 4, 2009 I have a circulation problem that causes my feet to get numb occasionally, and they always feel cold. I was told it was unrelated to my sciatica, and that massage therapy is what I should be looking into for that. (I am, as it is covered on my health insurance at work) My sciatica is not nearly as bad as yours however. I get a few bad days of it, each month, and it's usually caused by a specific task( cleaning the baseboards on all 4's) I've done the day before at work. I was also told to quit smoking. Yes, I have a date set for that. Suzanne, I have something called Raynaud`s Syndrome. It is part and parcel symptom that you get with fibromyalgia. It is benign. But my feet can get cold and turn blue, then red, then white.. Looks really freaky but it is nothing. Usually comes on when I am cold. This is not that. I am outside with same socks and same shoes on both feet. One foot is fine, the other foot is stone cold. I printed out what I wanted to say to the neuro. Nothing disparaging to the other dr. Just wanted a sort of second opinion. What are HIS thoughts? Does he say that it is normal and it will go away with time? If he does, then so be it. You get it a few times a MONTH! WHAT?? I thought this was something that would come and go like once in a really blue moon. Hmm. Massage therapy sounds so much better then Physcial therapy. Quote Link to comment Share on other sites More sharing options...
dragonlady1380 Posted March 4, 2009 Share Posted March 4, 2009 i get this Raynaud`s Syndrome thing in my fingers when im cold it feels weird to try and pick things up when this happenes but i have found that letting them sit in warm not hot water and gently massaging them helps so much and with in minutes they r back to normal. hope this info helps u Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted March 5, 2009 Share Posted March 5, 2009 Fred did not see the Neuro yesterday. He came into a war zone at work. Three new babies and two potentials so he was up to his backside in paperwork and stocking. I need to revise the letter that I wrote anyway. I almost fell down the stairs yesterday. My foot did not want to cooperate. I caught myself, thankfully. I did a little reading and I figured something out. My foot can actually be classified as drop foot. If you seem to drag your foot when you walk (which I do to some extent) that is foot drop. You do not get foot drop with sciatica. I am not going to write that I have foot drop though. Just going to add that I have to kinda sorta drag my foot sometimes or when I am walking it slaps down like I can not control it. I also woke up to a wicked charlie horse in the front of my leg. I have dealt with them on the back but never the front. If this was happening to both my legs, I would chalk it up to neuropathy from the diabetes. But it is only on the one leg. I can sit better now but everything below the knee has not gotten better. I will keep the PT up to speed when I go also. I hope Fred sees the Neuro before my PT appt. I want to make sure it is okay to do. Quote Link to comment Share on other sites More sharing options...
Gayle Posted March 5, 2009 Share Posted March 5, 2009 Last night on the local news an item was aired on acupuncture (sp). The lady had been diagnosed with fibro myalgia and degenerative discs also. She had the procedure done and was singing praises for the relief she received and being able to function without having surgery. Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted March 5, 2009 Share Posted March 5, 2009 There are acupuncturists that are very good in our area. I do not know if my insurance will cover it though. I will have to find out. I am definitely going to get some massage. Most definitely! Quote Link to comment Share on other sites More sharing options...
KathieB Posted March 5, 2009 Share Posted March 5, 2009 There are acupuncturists that are very good in our area. I do not know if my insurance will cover it though. I will have to find out. I am definitely going to get some massage. Most definitely! Heidi, be very clear with the masseuse as to what kind of massage you want and don't be shy about commenting if it isn't feeling the way you want it to. Soothing and relaxing massage is a far cry from deep tissue massage. Quote Link to comment Share on other sites More sharing options...
dragonlady1380 Posted March 6, 2009 Share Posted March 6, 2009 well today still feeling rough from wednesdays session john took it easy on me so we did a few leg stretches and i had 6 mins on the automatic bike then he took me to the parallel bars and had me pull myself up by my arms and he braced my legs then he told me to bend my elbows and he moved away from my legs and ofcourse my legs buckled we did this about five times then i got to go home my arms were the only thing not hurting now they ache so much. why is that u go in with one problem then come out with another one added to it hehehe. i took in some cards i had made so they could be sold to raise money for the center and i already have requests for easter cards. so i went shopping and have some nice stuff to play with hehehehehe. Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted March 7, 2009 Share Posted March 7, 2009 Keep it up Dawn. You will see the end of the pain tunnel I am sure. My foot is still slapping on the pavement. I tried really hard to walk normal and my right foot just would not do it. I am going to be mega mad if I find out that this was NOT sciatica and something else that should have been taken care of sooner. If I have permanent damage I will be making a phone call. I am not one to jump on the *sue happy* train but this kind of stuff does deserve it. Fred did not make it to the Neuro again today. They are rockin and rollin in the NICU this week. I even asked him if he minded that I asked him. He said oh no, it is just been too busy. He will make sure he goes on Monday early to talk to him. I want to find out what he thinks before I go to PT. Quote Link to comment Share on other sites More sharing options...
Deb Posted March 7, 2009 Author Share Posted March 7, 2009 My PT and I had a nice, long talk today about fibro and CMP and why the session last week almost sent me to the hospital. He understood and said that if the PT caused more pain, it wasn't the right kind of exercises. So we've stepped back to just doing leg stretches this time. No machines, just him pulling and twisting my legs to stretch the muscles. I'm in pain tonight but it's "normal" pain. I took some tramadol and it's helping. (it also makes me a little loopy so what I type now may not make sense later) As long as I don't have the delayed onset pain in a couple of days, we may be on the right track now. He said he knows a PT who is putting together some stuff about fibro and CMP so he's going to contact him before next week. I'm really glad that he's willing to work with me and help find a treatment plan that works. He also talked to me about Heidi's foot problem and said the foot drop isn't normal with sciatica. Back to my heating pad now. Deb Quote Link to comment Share on other sites More sharing options...
dragonlady1380 Posted March 7, 2009 Share Posted March 7, 2009 well here in bonnie cold cant make its mind up weather wise scotland it is now 4.20am and ive had to take double my sleeping meds as im too sore and overly knackered to sleep and im still up my body feels ready for sleep but my eyes and mind r wide awake. ive watched a move to try and ware my eyes out didnt work. ive been reading on the computer didnt work, ive had a hot choc didnt work. ive taken all my meds the tramadol, codydromol, amytriptiline, diclofenac and my iron tablet and still im wide awake so thats over 175g of meds and im not knocked out. best thing is when i want to stay awake and im only taking the pain meds and iron one they knock me out but when i want them to knock me out they dont grrrrr sorry for rambling but im bored and lonely hubby is in bed dogs r asleep no tv and every one i was talking to on the net has gone to bed. Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted March 7, 2009 Share Posted March 7, 2009 He also talked to me about Heidi's foot problem and said the foot drop isn't normal with sciatica. Back to my heating pad now. Deb I have been doing some real reading and not over analyzing anything with the foot. I could start screaming MS or Bone Tumors because all that stuff came up in the diagnostics that I was reading. One thing popped out at me. Foot Drop needs to be taken care of right away. It could mean that I have a herniated disc (from last summer) and that it is now presenting itself in this manner. If I let them let it go I could end up having this become permanent. When you have permanent foot drop you can either end up wearing a brace all your life or they can fuse your bones in your ankles (ugh! that just sounds bad!) One of the signs is the pain and tightness in my shin and the fact that I am up at 3am cause of pain. There was stuff about disc encasement. Thanks Deb for the email cause you made me really really read some stuff. So on Monday Fred is going to the Neurosurgeons office early. Way Way before he has to be into work. You see, they will not see you unless you need surgery. My friend even remarked about how she could hear my foot across her apartment when I was walking to throw something away. Does this mean Heidi is in for more surgery? I dont know. I DO know that I have to finish this Arthur Toot Sweet! Now I am really worried about having PT because if they are PTing me for sciatica but I actually have a herniated disc could they do more damage. Quote Link to comment Share on other sites More sharing options...
avidcrazyquilter Posted March 7, 2009 Share Posted March 7, 2009 Heidi, Another thing you might have them check is your potassium level. when mine was real low i had the same symptom. Weird but as soon as I got on prescribed potassium it quit. Quote Link to comment Share on other sites More sharing options...
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