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Posted 11/8/2014 1:50 AM (GMT 0)
Hi. I have been diagnosed from my general practitioner with fibro. I went to an RA who examined and confirmed. However, massage therapist and chiropractor said if I had fibo I would feel much pain when touched. I do feel much pain but it is deep and constant, although the intensity fluctuates. I'm wondering if it is arthritis and a bit of scoliosis which I have. I can 't seem to accept that it is fibromyalgia and I feel like I'm losing my mind. I have tried accupuncture, massage, physical therapy, nutritionist, traumeel injections but nothing seems to work long-term. I cannot sleep without ambien and sometimes my left side starts to burn, my face feels numb, my knees tingle and on and on. I find that I feel very lonely, even in a crowd. I have a loving, supportive husband and wonderful children, mom, etc. but still feel isolated. Currently I am taking cymbalta, gabapentin and hydrocodone (no more than 1 a day). I work full time at a desk job and by 3:00 my back is hurting so bad I am near tears. That is when I take the hydro. My neck and back are so tight it actually feels locked. Well I can go on and on, I am just looking for someone who can relate to what I am trying to explain. I hope I found the right place. Nothing else is working. I have not tried yoga. Any thoughts on yoga? Tonight my leg hurts to bad I cannot imagine assuming a yoga pose. Thank you for your thoughts and I apologize if I was all over the place but I feel very foggy tonight. Thankfully I have my faith and will not give up.
Posted 11/8/2014 2:42 AM (GMT 0)
Hi FaithAlways,
I fairly new here and I can relate to your issues. I'm on here because I'm kinda lonely since I can't get out and socialize as much due to the fibro. Just cancelled on my lunch date (again!) today.

I find Yoga a Godsend. I'm actually a Yoga teacher. What's strange is that I can't do jobs where there is lots of standing (retail and such) and I can't do jobs sitting at a desk all day. Misery and pain! But as long as I am moving and sit for brief periods, I'm usually okay. Yoga is perfect. It doesn't have to be anything fancy. Even just laying down on your mat or the floor and breathing, taking the focus of your breath to different areas of your body. I've been able to really clear my (muscle) trigger points with gentle movement, light massage, and yoga breath.

Maybe you can find a Gentle Yoga class somewhere near where you live. Restorative Yoga is also wonderful--you lay on bolsters, blankets, and such and rest in the poses. I'll look at some videos on line if you'd like. It's tough because on videos these fancy, smancy Yoga teachers do such complex poses and gumby stretches and it can get discouraging. We need more Average Folk Yoga demonstrations.

TAke care,
Jen
Posted 11/8/2014 4:41 AM (GMT 0)
Welcome faith to the forum! Your in the right place. I have found out this forum has been so beneficial to me. I have learned so much here plus get wonderful support. It sounds like your doing some of the right things to help reduce some of the fibro symptoms. Maybe you just need to adjust a few things in your fibro treatment. We are all so different in how we respond to meds and treatments. What works for one might not work for another.

Maybe look into taking magnesium for muscle pain. Have you had your vitamin D checked? Do you move around frequently at your desk? Do you have lots of stress in your life? Are you exercising on a daily basis? These are the things I found very helpful to myself. Sometimes just making some new adjustments in your treatment makes a world of difference. You can learn so much valuable info here. Many things you learn here are never shared by your Dr's.

Educating yourself about fibro is extremely helpful. I found out for myself reading some books on fibro will help in so many ways. You can get some free on line and others you can buy on line. Used books stores and library can be helpful too. It really helped relieved lots of anxiety about all the symptoms that fibro seems to cause. As I read the pages I could see myself on each page. It was like finding the missing puzzle to all my symtoms I was going through.

I would recommend to read post frequent here. Read and get new ideas on how to managed your fibro better. We cover so many topics here. I would ask your Dr. before trying new meds or treatments on your own first. This is how I started and it took about a month to see changes. I finally feel I have a good treatment plan going for me.

You dont have to feel alone anymore because you found a great forum for support. It's hard for our family to understand what we go through. The fibromites here are wonderful people. Sometimes just learning how to accept this syndrom will make things much easier. I really think that is one of the biggest things I have learned here.

It's not uncommon to have some cognitive memory issues with this. Mine has improved with better sleep pattern. I started taking a muscle relaxer at night and that made a world of difference. Many here take one to reduce the muscle spasms.

I hope we see around the forum again. I know it can be very helpful to someone that has fibro. I was at the bottom of the barrel when I came, but now I have good control over my fibro. Hopefully you can obtain the same.
Posted 11/8/2014 5:48 AM (GMT 0)
Thank you for the wonderful support and suggestions. It is comforting to know that now there is a place I can turn to. I will stay in touch. One quick question. Is there ever a long stretch of time when symptoms disappear and will it get worse with age?
Posted 11/8/2014 6:49 AM (GMT 0)
Hi, FaithAlways.

If you haven't, take a look at "Fibro 101," our first thread on the list. Lots of good reading there, and maybe it would help with some of your questions. Did your doctor do a lot of tests to rule out other conditions? If so, you may well have Fibro (what you wrote all sounds very familiar to me) but don't despair - it doesn't damage any organs and it's not fatal! It just drives you crazy!!

I've never (in about 30 years) had a period of time when my symptoms disappear....and as far as it getting worse with age, that's a difficult question to answer, because again, we're all different. I have more pain, fatigue, and memory problems than I used to, but I'm also a lot older, and have other physical problems to deal with, like nasty Sciatic pain, so - - who knows?

Doctors say Fibro itself doesn't get worse with time...at least, that's the current thinking.

You say your neck and back feel locked - I used to get that, it was awful! A chiropractor helped me a lot in the beginning (he said my sacral joint was locked down tight) but as time went on, I think he might have done more damage than good....but then, you said you've already tried a chiro...

I really believe in Yoga - did it when I was young - and although I can't get down on the floor, I'm sure there are things I could learn to do if I ever remembered....but that's another story.

I hope you'll keep posting, because we really are here for you.

Debbie
Posted 11/8/2014 7:07 AM (GMT 0)
Faith I wish I can say your symptoms will disappear at some time. There will be stories you will read that their fibro is gone and they took this miracle formula. I wouldn't believe that if I were you. There is know known cure for it yet. It might help the symptoms, but just becareful. Fibro is not to be known to be progressive in age.

I have known people to feel so much better including myself. There are some days now that I don't feel the symptoms. I think people learn how to manage their fibro keeping the flares uncontrolled. Then out of the blue something triggers it like over doing something or having lots of stress that week. Then you go into this fibro flare. So yes there could be a time where your fibro symptoms are laying low because you learned how to managed your fibro.

I have read many stories where fibromites say my fibro is gone. Then in a few weeks or months they come back saying they were wrong. My fibro symptoms are back! So I truly believe it's all about how you manage it.

There will be others that will way in on your post. It's a busy forum but can be a little slower on weekends. Your going to learn so much here. Feel free to ask questions or if you just need to vent the day away.
Posted 11/8/2014 2:12 PM (GMT 0)
I found in the beginning it was much harder to handle. In time, you will come to understand your body and how you are going to react to things. Like doing too much. You have to pace yourself at a slower pace now.

It isn't the end of the world though it may feel like it. Keep hanging in there, keep asking questions. We are all here to support you.

Hugs, Karen.

PS I like your member name... Nice...
Posted 11/8/2014 3:12 PM (GMT 0)
Faith,
I can relate to how you describe your work day ending. As I leave school each day, I feel like I have been in a car accident. I have to drive home and go right upstairs to lay down for awhile before I tackle dinner and eveining activities (which often is little to none, lol). I need to take tramadol (pain med) in order to get out of enough pain to fall asleep. By morning I am much better, and the routine begins again.
I try to build in rest time on weekends. Don't look too much into the future; right now, handle one day at a time.
Karen had very wise words (above this post).
HEART
Posted 11/9/2014 1:50 AM (GMT 0)
Hi Everyone. I am so thankful to have found this forum. Everyone is being so nice. I actually found myself looking forward to writing this evening.

I am going to take everyone up on their offers. I was also wondering if anyone was told to lay on the floor with a tennis ball pressed on your knots to try and release them. I'm trying to figure out the difference between fibro and myofascial pain syndrome. Anyway, I made it through the day although I have to say it was tough at times. We went to see a college for my daughter and the tour was on a bus. Well, it made me realize how different I really am. The tour guide was speaking on a microphone and I am sound, light and smell sensitive. I actually had to hold my ears. It sounded like she was screaming. I thought I would have a panic attack but I talked myself through it. Then my knee kept buckling and of course I was the last one in the back of the line. Does anyone have knee problems with this or is that a separate issue I have? At one point I felt so out of place I could have just cried right there. But I tried very hard and I did it. What I am beginning to realize is that I cannot do the things I used to. It's sad but could be worse.

Does anyone take hydrocodone for pain? I am trying not to take it but it seems that I need it at least once a day to continue with my responsibilities. Today I was looking around my house and I am getting depressed because I cannot clean the way I used to and want to. I just physically cannot do it. Where the heck in the world did this come from? I feel like it hit me so hard right after a shoulder surgery I had. Probably an unnecessary one because it was supposed to relieve my back pain but I am actually worse now.

Well, I hope everyone had as pain-free of a day as possible. And I am thankful for being able to write down my feelings. I think it will help. I hope I can help someone out there as well one day.

FaithAlways :)
Posted 11/9/2014 3:30 AM (GMT 0)
Hi,

Yes, have heard of the tennis ball...its in the trigger point handbook..the tennis ball just made me hurt...so i found that a softer rubber ball..would relieve the tension in the soft tissue, without making the pain worse...

Today my hips were really tight from shopping yesterday, and i got them loosened by sitting on a pool noodle on a chair...i thought of the pool noodle after the foam roller designed for this was just too hard for me...so i am adapting other items that work better with my myofascial pain...

I use low dose tramadol for pain..it helps but does not make me sleepy. My drs wife also has fibro , so once i agreed to some help , he did seem to know what to give me...however i cannot tolerate as much as he suggests...so i had to figure out how to lower dose for myself..i think the less we can take the better, but most of us do need at least some help with pain...

Lj
Posted 11/9/2014 4:23 AM (GMT 0)
Faith- it sounds like some of your symptoms your having with your hearing can come from Cymbalta. I was on Cymbalta and it made everything so loud to the point I jumped out of my skin. Even after stoping it I have had hearing problems which I never had before. So don't think your crazy! Your knees might be from fibro in the joints. I have this issue. It also could be from normal wear and tear from the ligament and joints.

If your taking just one Vicodin or norco you are doing great. Many here do take narcotics for pain control and have no problems. I took lots of heavy narcotics for years until it became very unhealthy for me. So I got off them and went with a synethic narcotic drug called buprenorphine or subutex. It less additive and long acting. It doesn't mess with your brain. I have done great on it. I would never go back to heavy narcotics again. I would worry your not getting good pain control with just one Vicodin a day. If your pain is controlled it makes life so much better to enjoy. You have to remember we are all different in how well we can handle pain. Your activity level might be higher then mine and you might require more. Many here have numerious health issues besides fibro too.

Try not get to discourage about not getting things done. Maybe you can make a list and try to tackle one thing at a time. It makes me feel good to be able to mark it off. I am a clean freak so it's hard for me to sit back and let things go. I had to learn to ask for help plus I learned things can wait. The best thing I have learned here was do things in moderation. If you choose to clean for hours it will haunt you for sure with pain. Lol

I would talk with your Dr. about the Cymbalta if you continue to have the hearing problem. That is one reason I stop mine with other side effects included. I found out the more natural I keep my treatment plan for fibro the better I am. Fibromites are known to have high sensitivity to drugs.

There are many people here use the trigger point handbook here. I have never done it. I use my hot tub and let the jets beat on my shoulders, neck and back.

Post Edited (ak angel) : 11/8/2014 9:27:42 PM (GMT-7)

Posted 11/10/2014 5:09 PM (GMT 0)
I was wondering if anyone has an issue with their knee buckling. This has just started about one week ago. I was having pain on the outside of my knee along the bone but now it actually gives out when I stand up and begin to walk if I put pressure on it. It happens about twice a day now. I was wondering if this is fibro related or if I have to go to a knee orthopedic doctor. I am in the frame of mind that I wonder why bother anymore but it just happened at work and I caught myself on the copier machine. So embarrassing and quite honestly scary.
Posted 11/10/2014 6:25 PM (GMT 0)
Hi, FaithAlways, and welcome! I'm so sorry to be late in responding but was very busy this weekend. But you sure have gotten a lot of your questions answered! We do have great members who love to help one another.

A lot sounds like fibro and anxiety. The more you think about things, the more you feel them and new things will crop up. Anxiety does that. I used to read many medical things and then I would take on the symptoms! I had to stop that. I love what Mark Twain said about reading a lot about illness. He said you could die from a misprint. LOL But once I got my anxiety under control and started living my life again, I did a lot better with fibro.

BUT, you have mentioned in your posts about your knee and also you have had swelling. Fibromyalgia isn't considered an inflammatory illness. You can "feel" like things are swollen but they really aren't. It you are getting swelling there is something else most likely causing this.

I have fibromyalgia and a host of other problems. I have bad back problems caused by ankylosing spondylitis but I thought for quite a few years that fibro was causing this. I also have a touch of arthritis and several autoimmune problems. So, not everything is caused by fibro. It's easy to think that because we can get many weird symptoms but it's good to get checked out for the more serious ones. I did this with my back and also when I got heart palpitations.

Were you given a lot of tests to rule out other illnesses? Sometimes its too easy for doctors to label us with fibromyalgia and don't bother to run all of the necessary tests. You see, fibro shares many symptoms of other illnesses and these other illnesses have different treatment than fibro. I do hope you did get tested thoroughly.

I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a muscle relaxer called Robaxin that has helped me significantly with the pain and fatigue. I also walk daily as a form of gentle exercies, do stretching exercises, and I pace myself when doing things. All of this has helped me get my pain under control. Because of this, I have lived a full and enjoyable life in spite of this illness. You will too once you find what helps you control your pain.

Be sure to read Fibro 101...the first thread on the forum. There are good links about fibro and you will learn a lot there. Good starting links for you would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. I think you will see much of what you are going through there. There are links about magnesium malate and vitamin D3 and how they work in the body and also a great link about how to maintain a positive attitude when you suffer from chronic pain. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 11/10/2014 7:40 PM (GMT 0)
Hi Faith:

You have many good suggestions. I have Osteoarthritis in multiple joints. Some is noted as mild. I also have Fibromyalgia and Neuralgia along with other problems. My knees are one of the places with mild Osteoarthritis. I have had my knees buckle on me a few times. One time it happened after my Physiotherapy in a heated pool program. I went to the washroom after and of course you don't want to sit. Well my knees buckled and I almost fell into the toilet. I now use the stalls with bars to hold onto. The Physiotherapy has been good for me.

I asked my Headache and Pain Relief Doctor if I had pinched nerves. He said I don't have pinched nerves but I do have myofascial pain. My muscles tighten to protect the nerves but in doing so the nerves become irritated. I often wonder if my bowels have something to do with the muscle tightening in my head. It certainly would be a good thing if your muscles detect something wrong and tighten to protect your brain. This is just a theory of mine and of course I am not a Doctor. I did have two times where I believe I hit nerves. I had so much pain going up into my head.

My Registered Massage Therapist told me about the tennis ball. I have a lot of pain at the base of my skull and right in the middle he said I could try putting light pressure from a tennis ball. If it helps me it is only for a second. The moment I stop the pain comes back. I do find some relief with a warm wet washcloth on my face. Again, it helps for seconds and when you stop the pain comes back.

I have only taken hydrocodone 3 times. It was prescribed in a syrup form to stop coughing when I had a horrible virus. I won't ask for it again. The last time I used it I had a sleep walking episode and I fell from the stairs to my wooden floor. I don't need strong medication. In the beginning a Neurologist tried the Fentanyl Patch. I ended up getting quite sick and thought it might be the Patch and stopped using it. Next he tried Oxycontin. This was not good for me - way too strong. Now I take medication, supplements and use pain cream. I had to stop Tylenol due to rebound headaches. I have tried Tramadol but my Doctor has not prescribed it for ongoing use. I am never totally out of pain. I don't like it and my brain doesn't like it but I have had to accept it.

Cleaning. I, too, worked very hard in a job and then on weekends cleaned the house and did laundry. I shopped during the week and brought it home and put it away. My Husband is helping now. For years I did it all. I told a Doctor that to relieve stress I clean the house. I have had to accept non perfection but I have bought tools to help clean. Nothing is non stop. I need to do a bit each day. I am not working. I tidy the house during the week and on weekends my Husband takes me shopping. I am struggling after a car accident but before I was able to at least put food we need into the cart. I can't push the big carts, my Husband does that.

It is life changing but you don't have to give up everything you enjoy in life.

Loring

Osteoarthritis in Multiple Joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...
Naproxen (NSAID), Baclofen (Muscle Relaxer), Nortriptyline (Anti-Depressent), Premarin (HRT),
1,000 mg Vitamin C, 1 Multi Vitamin, 5,000 IU Vitamin D, Glucosamine, Chondroitin and MSM, Omega 3 + COQ10 and plant sterols, Magnesium Glycinate and Magnesium Calm. Pain Creams, Heat and Ice.
Posted 11/10/2014 9:35 PM (GMT 0)
Hi. Thank you both for answering. It feels so much better to know there are people out there who understand. I sit at work sometimes and feel so alone in this illness. I am going to read the Fibro 101 threads for sure this evening when I am wide awake! lol My muscles twitch when I get in bed that is another thing. There are way to many to list as I'm sure you all know.

As I am not sure what's going on with my knees I will be sure to keep an eye on it and tell my doctor if it doesn't stop. I was also wondering if anyone out there takes Cymbalta. Tomorrow is one week since I went from 30 mg to 60 mg and I'm wondering if the weak painful knees are a side effect. I looked it up but could find nothing. I also have a very terrible feeling of being lethargic, anxious, scared and frustrated at the same time. Anyone have any suggestions on Cymbalta. I was thinking I would give it 2 weeks and see how I feel.

I hope everyone is having a good day. This is the time of day I feel the worst, not the mornings strangely enough. It's right now. I leave work at 5:30 and the thought of the things I have to do at home tonight (even just minimal) are overwhelming me. Well, thank you again for your thoughts and comments.
Posted 11/10/2014 10:41 PM (GMT 0)
Being deficient in magnesium can cause muscle twitching.

Sherrine
Posted 11/10/2014 11:04 PM (GMT 0)
Give the Cymbalta at least four weeks, sometimes it takes eight to reach it's full potential. I just had an antidepressant increase last month and I am now feeling better.

Like Sherrine pointed out, try not to think about your symptoms. The more that you think about it, the more you notice things. Often we exaggerate them in our minds. Just because we do have so much going on at once.

Try gentle stretching for your twitching. Don't stretch to the point of resistance, just a gentle stretch. I find that when I had restless leg, which was horrible, walking during the day helped. I don't know if what you are going through is similar, you might need a muscle relaxer.

I hope that you feel better soon. Try to take things one day at a time. People with fibro get fibrofog so easily. And too much seems overwhelming, then we stress. Stress and cold is our enemy. Unless you like cold.

Take care,

Hugs, Karen...
Posted 11/11/2014 1:03 AM (GMT 0)
Welcome Faith!

You have come to such a wonderful place for great advice and support. You have been given great advice.

I wanted to just give my opinion on your knee. I have had 13 knee surgeries and know a bit about knees. A knee can buckle for a few different reasons. Mine does right know because my muscles around the knee are week. You had mentioned pain on the side of your knee...pain is definitely a symptom of Fibro, but I personally would get your knee checked by an orthopedic . I think it is better safe than sorry. Having your knee give out can be dangerous. A month ago mine gave out on the stairs. I fell down them and fractured my foot. I'm lucky it could have been much worse.

I wish you the best with your fibro and knee. Bring in constant pain is very difficult. Figuring out the " new" you due to fibro is hard. I still struggle w over doing it but have become much better at it. I even started a new job w less hours. It has made a huge difference. Financially a bit harder but I am able to enjoy life better each day. I still have flares but not nearly as often.

I hope you will continue to post and let us know how you are doing!

Gentle hugs!!

Dawn
Posted 11/11/2014 2:01 AM (GMT 0)
Thank you again everyone. I am seeing a nutritionist and have starting taking magnesium citrate among a list of other things including Vitamin D, CQ10, etc. I bought a flexible knee brace on my way home tonight at CVS. Making it tighter seems to have helped a bit but I am absolutely going to see an ortho if it continues. It just started.

I am going to take all your suggestions and try and distract myself when the symptoms are on my mind (which is all the time). As a matter of fact, I am off to watch The Voice now! I have a tens unit and am going to ask my husband to hook me up for 30 minutes, sit in the recliner and relax!

Goodnight and I am so grateful to all your kind words of support and advice.

P.S.: I can't believe you had 13 surgeries on your knee! I just had shoulder surgery last December and I feel like it made the muscles in my back worse.

Sending happy thoughts and smiles.
Posted 11/11/2014 4:43 AM (GMT 0)
Faith I would get your knee checked out. Mine was doing that and I bought one of those knee braces over the counter too. Went to see my ortho and actually he wanted me not to use it because it put my knee in the wrong position for my condition which could cause more problems. So hopefully it's not something to bad and it can be fixed without surgery. Sometimes physical therapy works well!
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