This week it's my right side-the big joint at the top of my leg is so painful and it radiates down my thigh and then down the front of my leg below the knee. It is so painful I can barely get down a flight of stairs. Coming back up the stairs isn't as painful as going down. If I am in a crouching position and go to stand up that leg just about takes me down. Next week it will be somewhere else, there is no pattern to this on-going pain. I wake up and I have to lie there and then very slowly try to work out all the pain so I can get out of bed and ususally feel like crap till sometime in the afternoon, mornings are awful. I went back to the Dr today and he gave me T3"s for pain but it won't help I have tried everything-Advil, naproxen, Advil Platinum Robax , arthotec, meloxicam and muscle relaxer's. Is there anything that can ease out this pain? I feel so decrepid at 54 how will I be after I turn 55 in June? I also have chronic fatigue and it is a real challenge to get doing things without having to lie down in between. What causes this body breakdown< and is there any advise from anyone? Help.
Do they have Lyrica in Canada Yet ? Sounds like you may need some of that along with the muscle relaxers. Here in the states they can prescribe high dose pain killers but you run the risk of getting addicted. They are stronger than the T-3's. I dont believe any fibro suffers have good mornings. They are tuff, most suffers can't get going until the afternoon. Its awful, your not alone and to be honest, it just stinks ! some of the folks here are in their 20's and 30's but the youngest i have come across is 17 and she thinks her life is over with that is sad. If you think its the nerves causing the pain you may want to try the Lyrica or Nuerontin (but nuerontin, if you try it i would be careful with) it worked miracles for me but had its drawbacks for myself. Viocdan, percocets, percodan and Oxycotins are high dosed pain killers. Then there are a couple mild one like ultram or tramadol but they are one and the same one is a generic brand. Thats about all i can think of at the moment. You can look those up on the computer and recieve more info or just keep reading the boards. Some of the patients are on other meds and see what you can find out about them. Hope this helps a little and i hope you get to feeling better soon because yikes that sounds awfully painful. Good luck to you...........
I think we can all feel your pain... The fibro can rear its ugly little head anywhere and everywhere at any given time... You have to take care of yourself both physically and mentally... Remember that stress plays a very big role with the fibro also.. I myself take Lortab, mobic, muscle relaxers, neurotin... I also suffer with migraines so I take topomax for that... Now I am also BiPolar 1 so I take quite a lot more meds for that for a grand total of 31 pills per day... I also get trigger point injections every 28 days.... I am still in pain every day... On a scale of 1-10, it never goes below a 6... Just remember everyone is different and different meds work differently for everyone else...
When you find yourself down, come here and vent, or whatever it is you need to do and we will be here to pick you up... You will find that only someone with fibro can truly understand what you are going through.... If you have days where you feel like you can't get out of bed, then don't... You will learn that your body needs to stay there sometimes... If you try to push your body to much, you will pay for it...
Have you tried heating pads? Sometimes these help quite a bit... Some people use heat while others can only use ice packs, see what helps you the most... I cannot use ice packs...
Come here anytime you have questions and believe me, somebody will be able to help... If you need a shoulder, there are many of those here... Don't ever feel bad when you need us because some day, we will need you also...
You have come to the right place... I am sending angels to help you through during these hard times Jenn
Thanks for the quick reply sweetjerseygirl. Doctor's up here in Canada are very sticky when it comes to prescribing anything for pain. Even if like me the ones they do give out don't help. I thought if I worked it out with exercise it would help but it makes it worse the next day I am really seized up so it's hard to get on a plan of exercise. I do walk my dogs for 20-30 minutes here and there but I know I will pay for it. Thanks for hearing me out and it's good to be on this board where people know what we are going through. My husband is very good-he doesn't understand the fibro-chronic fatique issue but he knows I hurt alot and I have to lie down alot to rest, he knows it's for real what I am feeling. Thanks again.
Thanks Jenn, yes I also deal with bi-polar and I am taking Wellbutrin and Prozac for that. I have type 2 diabetes and take Metformin for that and blood pressure meds, lipitor (I understand that the lipitor helps with tryglicerides but it also contributes to muscle pain, so every once in a while I take a break from it. So lots of meds in me too. I really appreciate the welcome I have received on this board, I have been on other boards on this site and they are also wonderful. Thanks for the angels-I love angels.
Oh you are very welcome. Lyrica and Nuerontin, you will not get the effects of feeling high. They are for the nerves, thats why i mentioned those two, so next time ask the doctor, look them up if you have to and get ready to have a talk with him. Nerve pain can be very unbearable. I have permanant nerve damage but i consider myself lucky, as to your pain. I had some shots in my spine and the Nuerontin was a blessing until i started to have a few problems with it. Becareful with your exercise, even though its the best for us to move, when we over do it, we pay. I had to cut down to thirty mins., and every once in awhile when im walking my little fat dog Roxie, my knee will go out or i get that pain in one side of my butt, which if im not careful leads to sciatica, now that pain that i suffer sound as brutal as what you suffer frequently. I had that years ago and wish to never feel it again. Now i only get it once in awhile since the shots. Good luck sweetie and you are not alone as the darling Jenn has told you, we are here for you
Thanks Sweetjerseygirl I will write these prescription names down I have an appt with the Dr on the 15th.and look forward to mentioning it to him, after all we are in charge of our own health, you pretty well have to tell your Dr what you need. It is nerve pain, I get it in my shoulder too and down my arm. I get sciatica also, I can't even vacumn for any longer than 10 minute stints without almost crying from the pain in my back, butt and leg. You know I have had this roaming pain for years and I thought it was because I had arthritis or was out of shape, but the pain is never consistant. Last month it was my left leg, I had pins and needles down my leg to my feet-I was finally relieved of that and now this. I use to feel so ridiculous and I feel like such a complainer because most of your freinds and family think they have the perfect solutions to get you better-they have all the answers! But they don't understand. When I say fibro they have never heard of it, I just need to get some exercise-yea right-on. Thanks for the welcome.
I had to address the statement that if you take pain pills like oxycontin, etc, that you run the risk of getting addicted. That is untrue. Studies show that people in chronic pain generally do NOT get addicted, but they DO gain a tolerance to the drug and a dependency. This is not addiction. Addiction is needing the drug to get high, dependency is needing the drug for pain relief.
If you take your meds as they are rx'd and do not take more than advised, taper up with the advise of your doctor then the odds are very good you will not get addicted. That said, when you come off of them after taking them long term you will have to taper off because there are withdrawl symptoms when you stop, but tapering of the dosage decreases these and with the advise of a doctor the side effects should be minimal.
I take methadone and dilaudid for pain and have taken pain meds (opiods) for over 5 years and I am not addicted. I do have a dependency because I need them every day for pain, just like someone with diabetes needs their insulin. It's no different.
This is a stigma with pain meds I wanted to clarify so that nobody is afraid to try them for uncontrolled pain. If it weren't for these meds I would be in the bed ALL day.
Sandy
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I'm on SSDI with 3 kids, a great man, and several dogs and cats. I have a myriad of pain causing medical problems.
I was just recently diagnosed with fibromyalgia, but now that I look back, I bet I have had it much longer than the last six months that I have been miserable. I am only 28 years old and have a miriad of issues in addition to my fibro; however, when I look at them as a whole, I really think that they are all interrelated.
Five years ago, I had a major meltdown. I was unable to sleep, I was crying for no apparent reason even though I may have been laughing just minutes before. First they tried Lexapro...caused me to drink excessively and I gained 30 pounds. Next was Wellbutrin...never have I been so ill. I finally "fired" my doctor and now I have the best doctor in the world and she technically is only a Nurse Practitioner. I have to travel further to see her, but I wouldn't trade her for the world. She put me on Zoloft and I finally became myself again (which I thought I had lost forever).
I have also been suffering from migraines since I was really young, have had numerous CT scans and such and they have never been able to figure out what the problem was. None of the prescription migraine medications work for me and some of them even made them worse. I finally had it and told my neurologist that we needed to fix it. Topamax has been my life saver from my debilitating migraines. "knock on wood", I have only had one migraine in the year and a half that I have been taking the Topamax.
When I was 27 I asked to have my cholesterol tested even though I had been told that I was not "at risk" as I was not overweight and I was "healthy". I insisted anyway. Well, good thing, because it was off the chart. Now, I have to take Lipitor for the rest of my life because even with exercising (which we fibromites all know is now limited) and a diet change, I still need the meds.
Lets see, that brings us to this past fall. I was getting so fatigued that I really couldn't function. The pain was an afterthought at that point, I think that over the years I had started to put it in the back of my mind. I saw an endocrinologist, a neurologist, an ENT, and NO ONE could tell me what was wrong. Surprisingly enough though, my ENT requested a sleep study which showed I grind my teeth so I was referred to a jaw specialist who told me that I had the teeth of an elderly person because my wear and tear was so bad! OMG was all I could think! He took an xray and found out that I have arthritis in my left jaw joint as well as myofacial pain and something else that I can't remember. I know go to PT once a week for my jaw and for the most part it has made my pain there feel so much better. Oh, I also have to wear a splint at night too. My dad has been telling me now that I am really and 80 year old, but I live in a 28ish body.
Fast forward to the first of the year...referred to a gastroenterologist. Yup...something different...I needed surgery to remove hemorrhoids, and to repair a fissure. Not even related, so now I am thinking what else can go wrong and they can't even figure out what I want them to figure out! Surprisingly the surgery ended up helping me get my diagnosis because after two weeks out of work I was sent back to work and my symptoms (now known to be fibro) were out of control. I had pain out of control, extreme fatigue, and the worst part is I was making mistakes at work on even the most simple of tasks.
I was then referred to the rheumatologist who took one look at my chart, and knew what I had even before he did the tender points test on me. As much as I dreaded this diagnosis, I was so relieved to FINALLY have a diagnosis. First they tried Amitriptyline in conjunction with my zoloft to see if I could get a more restful sleep, but it had the opposite effect on me. So, today I was told to start taking Lyrica....crossing my fingers that this will work. He also advised me that exercise is VERY important. I should start slow at first...and he meant it. He said to start with 5 minutes a day for a month and increase by 5 minutes each month so that you get up to one hour after a year. The exercise should only be low impact such as walking or swimming. No strength training or you will over do it. If you find what you are doing is too much, back it down to what you know isn't over doing it.
I have now been out of work for almost 4 weeks and just got approval of my short term disability claim. I have been told that I will not be allowed back until they get my situation under control. I am hoping the Lyrica will work.
Sorry for the long post, but I feel so comfortable spilling everything about myself on this board. I know I won't be judged or feel bad for it. I truly feel for everyone here as I understand what you are going through.
Just to put a bug out there, if anyone needs help with disability insurance, I would be more than happy to try to help you out. I work for a disability carrier and am well aware of what the process is in reviewing a claim and what is needed. It can be a difficult process, and I may have some tips that can help make your claim process easier.
Prayers that everyone has more better days the bad ones...
Last edited by gaudet2; 04-09-2008 at 07:26 PM.
Reason: forgot some info and needed to fix typos.
Ebrena - Have you had an MRI or CAT scan of your spine? You are about the same age as my mom who also suffers with fibro and spinal stenosis which is a degeneration disease. Your back, butt, leg pain sounds just like hers. If you have not had a scan done lately, I would urge you to request one. You can also have degeneration in your upper spine as well. If you have this condition then it would surely make your fibro flare up. There are other pain treatment options for stenosis that may help ease your pain...if this is what you have. Of course, I'm not suggesting that fibro can't cause this type of pain as well, but given your age it would be good to rule out any spinal changes that can occur at middle age. I hope your doctor will be understanding and helpful in getting you more comfortable soon.
Ebrena, I had the same hip thing this week, but really bad a couple of years ago and was diagnosed with "bursitis." That was before the fm diagnosis. My husband had that same pain and I had to threaten him with getting a neighbor or the emt's if he didn't get off the bathroom floor, through the hall, and down the stairs so he could try a chiropractor for the first time in his life (after scoffing for a good 25 years). That guy fixed him in one shot. He enjoyed a day or two, then ended up back there. He ended up doing pt and the chiropractor for several months, I got him a new mattress, his company got him a $800 chair and he's been fine since. If he feels it again, he goes to the chiropractor. When I had it, they put me on the dread prednisone and it was better after two rounds of that. I feel for you girl, that pain is awful!
Hey, Gaudet, how about joining us on "I Dare You." We're always looking for others to join us in the challenge to do just some piddling amount of exercise a day--set a goal and do it. Welcome, by the way, though I'm sure you'd rather be other places than among us! Y'all take care.
Ebrena - Have you had an MRI or CAT scan of your spine? You are about the same age as my mom who also suffers with fibro and spinal stenosis which is a degeneration disease. Your back, butt, leg pain sounds just like hers. If you have not had a scan done lately, I would urge you to request one. You can also have degeneration in your upper spine as well. If you have this condition then it would surely make your fibro flare up. There are other pain treatment options for stenosis that may help ease your pain...if this is what you have. Of course, I'm not suggesting that fibro can't cause this type of pain as well, but given your age it would be good to rule out any spinal changes that can occur at middle age. I hope your doctor will be understanding and helpful in getting you more comfortable soon.
Hi Bleigh thanks for replying to my post. Yes I did have a CAT scan of both upper and lower spin and I do have some degenerated disks for sure it is adding to my pain level. Most of my pain is roaming like my arms - elbow,wrists,fingers, shoulders, shoulder socket. Legs (could be from my spine) both sides at different times - sometimes a constant searing pain and sometimes numbness. My lower back, hips, leg joints, knees, feet (metatarsal) & ankles. Nothing in the med dept. has helped my pain yet so I am going armed next week to the Dr with the names of some nerve meds.
It could very well have something to do with my degenerated body,ha! I need an overhall. I have had most of these symptoms for about 20 years around the time I was diagnosed with Hashimotos Thyroid which my immune sytem destroyed. I get so dizzy from the neck/head issue. I took 2-T3"s the other night and in the am I could hardly walk I was so out of it with dizziness I had to lie back down again. No pain no gain-yea right=ha!
Wow, reading all these posts and seeing how much pain you ladies are in is so scary.
I am 26 years old and was finally diagnosed (acurately I HOPE) with myofascial pain about a year ago, but have been dealing with daily neck, shoulder and upper back pain, headaches and daily fatigue for about 3 years.
I was initially under the care of a chiropractor who in my opinion, due to his interest in being paid by my insurance rather than help me with my situation, he gave me chiropractic adjustments for about a year. The adjustments did bring me some relief, BUT they were not long lasting. He did this for a year eventhough I repeatedly told him that the pain was worse than when I initially started seeing him. Finally, fed up I spoke to my primary care physician who had me have MRI's and CT scans and finally determined that U had severe muscle spasms and sent me to a pain management specialist. The pain management Dr. referred me to a physical therapist and suggested I undergo PT for 3 months before trying more invasive treatment. The very first DAY after my first PT session I felt relief! I was like in shock, not feeling the pain I had felt everyday for the past 3 years was so strange to me. I had PT for about 3 months, and although the pain did not leave completely, it did decrease substantially. Because my pain was not gone, I the pain management Dr. did 2 sessions of trigger point injections which also provided much relief but my pain is still not completely gone.
I am now attending yoga classes regularly in an attempt to relax and stretch my muscles, but I've only attened about 7 classes so can't really say if it is helping or not.
Just recently I started doing some research to see if there was an actual doctor that specialized in the treatment of myofascial pain and fibromyalgia and I discovered that the doctors that specialize in this are PHYSIATRIST and practice physical medicine and rehabilitation. I have located a few in my area and will be contacting them next week to make an appointment with one.
This has been one of the toughest battles of my life. I am 26 years old, work full time and go to school full time and its hard to get up every day when you're in such constant pain, and most people don;t even understand what you're going through!!
It is scary reading these posts because I sit here and wonder, is there a solution for us? I pray every day that there is.
I wish you all the best and hope that we can all be pain free some day.
Sabrina, so many of us feel your pain. I started out with myofascial pain syndrome....pain in neck, upper back, fatigue. I also was told by a civilian doctor (I was military at the time and had to go leave my duty station in Germany to get seen in my hometown as I was so desperate) that I was having severe muscle spasms in my neck. Just try to stay positive. I know it's hard as living with daily pain isn't fun, but you just can't let it beat you down. It may keep you down on the couch but it does not have to take away your spirit. Keep doing your exercises and stretching. When I get the myofascial pain in my back I stretch in the shower and it really does provide some relief. Good luck at the docs and hope they can offer you some helpful solutions.
Ebrena - have you talked with your doctor about doing nerve blocks??? For many with degenerative disks they get relief from nerve blocks. I'm sure you can have them done in the upper spine as well as in the lower spine. Not sure if you can have both locations done at the same time though. Maybe you can find out if this could be a good option for you. I just feel so sorry for you as it sounds like your pain is so much like my moms. She has had several nerve blocks....some have helped tremendously and other were more of a miss. They can be a bit tricky so if the first doesn't work that great the next one my be right on....
I've been dealing with upper back pain (recurring upper back spasms) and general malaise for about 5 yrs. I got the dreaded diagnoses of fibromyalgia, and wanted to punch the doctor in the face when he said, "don't worry it's nothing really that bad". (actually I wanted to punch him after I found out what it was) Nothing bad about diagnosing someone with a lifetime of pain!! After seeing doctors, physio therapists and osteopaths, I have decided that perhaps my physical symptoms may stem from something that is stress or anxiety related: the back pain started when I was at the end of my rope with my old job. After having started my new job, (while so far I thoroughly enjoy it) I went through some stress at the initial training and exam time, and found my back jammed at that time as well. My back has "gone out" about 5 times in the last 6 months. I guess a new job for someone who is afraid of failure can do that. Anyway, I recently googled, "stress and upper back pain" and came upon Dr Sarno's TMS (Tension Myositis Syndrome) and even bought the books. The theory behind his approach is that once you let go of the idea that your pain is due to something physical and accept that it is psychological you will become pain free. I feel that I am a good candidate for this type of approach since I do feel that I spend a lot of time "controlling" my impulses. I am a bundle of nerves, and if I don't control myself, things tumble out of my mouth, and I end up getting in trouble. (was hyper active as a child) I also have other tension related conditions: TMJ because of clenching and bruxism of which I was diagnosed about 7 years ago. So because I am tired of being tired, and tired of being in pain, I've decided "what do I have to lose?" Does anyone else here think that their emotions may be playing a large part in their pain? Has anyone else tried this approach and succeeded?
Hi gaudet, i just started on lyrica about 4 days ago haven't had a bad headache since and got some relief from pain just slightly, my doc seems to think this is going to be the ticket for me, but i don't know i can only pray. I did sign up for diabiity but everyone says i will be denied, i have fibro, digenertative disc diesease in my neck and back, depression for 20 years,plantar facitis,bersitis and arthritis in my hand and i get bakers cyst on the back's of my knees which my doc says the only thing that can be done for the cyst i surgery, anyway i will accept any info on fibro or diability i can get i am new to this site and to disability i have worked most of my life and this is hard for me i told my doc the other day i wished i could just go to sleep and never wake up i am only 42 and have had plenty of pain and surgeries in my 20's and i am tired of hurting and having no energy and just don't feel productive and i told him and i still feel like i would be better off no existing. I know this will pass but when? Any way any help u can give me in applying for diability would be greatly appreciated, i just got my packet and havent finished filling it out.
Hi gaudet, i just started on lyrica about 4 days ago haven't had a bad headache since and got some relief from pain just slightly, my doc seems to think this is going to be the ticket for me, but i don't know i can only pray. I did sign up for diabiity but everyone says i will be denied, i have fibro, digenertative disc diesease in my neck and back, depression for 20 years,plantar facitis,bersitis and arthritis in my hand and i get bakers cyst on the back's of my knees which my doc says the only thing that can be done for the cyst i surgery, anyway i will accept any info on fibro or diability i can get i am new to this site and to disability i have worked most of my life and this is hard for me i told my doc the other day i wished i could just go to sleep and never wake up i am only 42 and have had plenty of pain and surgeries in my 20's and i am tired of hurting and having no energy and just don't feel productive and i told him and i still feel like i would be better off no existing. I know this will pass but when? Any way any help u can give me in applying for diability would be greatly appreciated, i just got my packet and havent finished filling it out.
I think with fibro and disability you need to make sure that they understand your limitations. For example, if you can vacuum, how long does it take you? Do you have to take breaks after 5 minutes, then start again? Does vacuuming make you very tired afterward and you have to lay down? Does it cause you pain? Put all those questions to your daily activities and write them down on your application if you haven't already sent it in. They want to know how doing things affects you and IF you can even do them at all. If you can't vacuum (or mop, drive, change the sheets, etc.) say so and give the reasons why. Be very thorough and make sure you describe your limitations in detail.
I think this is the reason I was denied the first time based on fibro. I just wasn't clear enough on how fibro defined my life.
They'll want to know if you can type, sit in a chair, etc. Tell them you can type but only for 5 minutes and you have to get up from the chair, or whatever is specific to you.
When I got my denial papers back they told me that I could work and had no limitations doing some sort of desk work and other jobs full time which was crazy! At that time I could barely function at all. I realized then how important the explanations are.
Good luck!
Sandy
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I'm on SSDI with 3 kids, a great man, and several dogs and cats. I have a myriad of pain causing medical problems.
I am so sorry to hear that you are in so much pain. It sounds so much like what I am going through though and I am only 28. I have had three surgeries since I was 19 and it has been harder and harder to bounce back from each one. I was just recently diagnosed with fibro and now I know that I have probably had it much longer than the last six months, but that this is just a new flare. How much lyrica are you on? I would be interested in knowing that and what types of symptoms you are experiencing. I am on 150mg 2x a day and I am feeling pretty loopy and tired all the time. I haven't even attempted to drive in the four or five days since I have started it (I just have people carting my butt around). I have been on Topamax for my headaches for about almost 2 years, so my headaches have been under control...knock on wood...so I only hope that the lyrica doesn't bring them back...lol.
Now to your disability question. Are you filing for disability through your employer or for SSDI (Social Security Disability Insurance)? There can be a huge difference in the outcomes unfortunately, but hopefully I can help you achieve a positive outcome regardless of what type you are filing for.
It sounds like you are attempting to file for SSDI though, so here is what I would suggest. Collect ALL of your medical records that have anything to do with your fibro diagnosis. Even if you don't think the parts of your records are something that is even related, I would send them. Make it clear that you are filing for a diagnosis of fibromyalgia. It is much harder to get an approval, especially on the first filing, if you are trying to file for more than one diagnosis. I know some people will send STACKS of medical records and still be denied. Make sure that your doctors notes are very thorough and to the point. I would even recommend getting a letter of recommendation of disability from any doctor who is currently treating you for your fibromyalgia...even down to your massage therapist, if you have one. Even the smallest of details can help you.
The reason I tell you to be very detailed and thorough with your claim submission is that there is a very good chance that your claim will be denied. There are VERY FEW claims for SSDI that are approved the first time they apply. Many times you have to apply two or three times and maybe have to get a lawyer. Also, the process can take a LONG time. I am not telling you this to discourage you, I am telling you this so that you make the right decisions the first time you apply so that they have the absolute most information that you can possibly provide to them. Leave no stone unturned...anyone who has treated you...get their records...it will help you in the long run.
How long has it been since you have worked? Is it because you chose to stop working or is it because your doctor told you that you could no longer work? Also, is there any possibility that you could work any type of job? These are questions that you may be asked. An Education and Employment History may be sent to you (I say may be, because I don't know their complete process). This form will show them what you have for education, what you have worked so that they can figure out what types of jobs you could work if you were not disabled. Then, they try to figure out if you, in any capacity could work any of the jobs on that list. If so, you may be awarded partial disability, or none at all. If not, you will likely be awarded full disability. It is hard to hear, but it is the nature of the beast.
I think I have covered all of your questions, I may have stirred up more for you in what I have just provided for info, so ask away...I am here to help you.
