Seen my doctor yst. THINGS ARE HORRIBLE

General
1

i wanted to go to the ER yesterday. my body was in pain as usual but i could no longer take it. i wanted someone to put me out my misery. it seems like everyone else seems to have figured out a way to handle their fibro or it isnt quite as bad as mine might be. i have pain everywhere and my back is the worst. i have to have a heating pad frequently (like now lol) just to relieve some of these horrble pains and feelings.

instead of going to the ER my doctor told me to come see him. he works in urgent care so things workd out for the best i guess. he gave me a torodal shot in my arm. he said it would relive my pain for up to two days and it should start working immediately. i was hurting to bad that i had to just barely sit or lean over the bed. my skin was tender and sore to the touch (still is) and my back was the same (still is) as well at my entire body.......

this shot did not help me in no way and it never kicked in. the doctor seems like he might be getting a bit frustrated he said out of all his patients i have fibro the worse. hes never seen it to this extreme and last month when i came in i was in tears and even my doctor teared up with me, hes a great doctor and hes doing what he can i feel. hes working with me. its just hard i know you all know this. and its hard to treat fibro.

i just feel so helpless most days. im 24 and i have no life besides NETFLIX. and i can barely take care of myself. things are just really hard. i wouldve never thought at this age my life would be so hard. ive forgotten my hopes and dreams and all i want now is to be healthy. im trying my best to hang in there but its hard. i dont have much support or barely any help.

i want to thank all of you guys for being my family and encouraging me when things get rough, its appreciated.

if any of you guys can leave any tips or ways you help to relieve pain or things you do to get you through the day while living with fibro... i would love that. thanks again.

TEESA

2

haha i think ive watched pretty much everything on netflix already too. i was getting sick of it but now im trying out things i said i would never watch. lol

i need another heating pad. i cant afford anything. barely my meds. i got fired from work, i just couldnt do it. it was too much. and yea i think it might be another underlying cause. thats something to look into i guess. i cant sleep well either and when i do i have these horrible nightmares that are so vivid and clear that i think back sometimes and i dont know whats real or not. i read in a book at the library that this happens to people with fibro. i hate it.

i have anxiety really bad too. i have generalized anxiety disorders.the panic attacks are really bad. i tend to stay to myself, although that isnt good. but i just dont like to be questioned constantly or looked at weird or anything. im haning in there. i hope you feel better soon hun. gentle hugs.

and be sure to look into finding you a good doctor.

Teesa

3

Hi Teesa
Yes I have been told there is a spectrum with fibro. Yes it’s awful when it flares and you are at a point where you need to use a wheelchair to be moved around and you can’t even propel the wheelchair. Unfortunately like many other serious illnesses there is no cure just palliative treatments to try to keep you more comfortable. I have worked out by now I probably won’t be pain free. I can have less pain once I am on the right medication. I am on slow release morphine and gabapentin and I have fast acting morphine for break through pain. I have many mobility aids and more recently have been provided with a pressure mattress for when I go to bed. I used to feel like I was getting into a sheet of concrete after changing my bed twice in 18 months I relised it wasn’t the bed it was the illness. The pressure mattress is affording me more comfort in bed. I am on a slow return to work, working currently four hours a day four days a week. I’m holding hope I will get back to working full time. I think it so important to hold onto hope. I find work is a distraction from the pain though I wonder about when I retire what I will do to distract from it. My last hospital admission with this was for two weeks and I was put through every conceivable test to no avail. I was not made to feel like I didn’t have something they knew it was real. This was when FM and CFS were positively diagnosed though Fm has been bandied around for years. It is hard to live with. I’m now only using a walking stick as balance is a problem for me as well all part of the FM. I find heat helps sooth when things are bad. I’ve started to use liquid food supplements as eating is often an issue for me, I smell food cooking and think no I can’t eat that as it sometimes has me gagging. Massage if you can find someone who will listen to you around how much pressure to apply can help…sometimes stirring things up a little settles the pain to a lower level sometime afterwards for me. Take care, Lindy

4

Hi Tessa I'm like you, I don't have flare's I'm in pain 24\7 and for 8 yrs they put me on and off all kinds of medication, I saw Rheumatologists, psychiatrist had many tests I was continuing to struggle to cope with the pain and fatigue It was like I had a pain button and somebody has there finger pressing it down continually 24\7 I was a RN and I was in more pain then the people I cared for I had to give up nursing my whole life was just taken over by pain, my body started to shut down due to the constant stress, my heart would beat so fast my lips would turn blue because it couldn't squeeze the blood effectively the heart because it was quivering. Every couple of days this was happening, they fix by stopping your heart while your awake and hope it jump starts back into a normal rhythm, them I got septicaemia because. my immune system was so weakened because of the chronic symptoms I have been enduring. I believe the only thing that gave me my life back and I mean a version of quality of life is Narcotics Oxy-Contin I take 60mg morning and night it doesn't cure you but it allows you to function and have some quality of life. I am not worried about addiction they are for chronic pain and that is what I have I increased the dosage in small amounts in 12 yrs they moniter you closely here I'm Australian, but if you havn't tried them give them a go it sounds you were like me beyond desperate I do know how you feel and I sincerely hope this helps you Warm Hugs Jeannie

5

Hi Teesa,

I'm not a Doctor, but I wanted to know what KIND of pain Torodol was used for, now from what this tells me, it should help me, as NSAIDS (anti-inflammatories) really help me for arthritis, but they won't touch the nerve pain of Fibromyalgia. So this may tell you that your pain is not going to be helped by this type of med for this type of pain.

Tramadol may have been a better fit for you????

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0012268/

Here is an interesting chart on painkillers.

http://www.vaughns-1-pagers.com/medicine/painkiller-comparison.htm

Of course you know that my empathy is with you always, but information is our very best defense every time, second only to experience! Hope you and your Doctor can soon find what really helps you.

Sending a big hug,

SK

6

Hey Teesa,

You’re describing me for the past year, minus the doctor part. I got a bad case of mono two years ago and it set off my FM so bad I basically became nonfunctional. I’m still not in good shape, particularly since I cannot find a doctor to treat me down here in MS, but through a lot of research and using myself as a guinea pig I’ve been able to bring my pain levels down to manageable portions. Im also 24 and unsure of how I’m supposed to pay my bills, my 30k student loan, etc when I can barely wait tables part-time anymore because of the fatigue and brain fog.

I believe FM presents particular challenges for young patients because on top of the laundry list of symptoms and multitudinous stigma we already have to face comes the fact that those of us who get this disease in our youth are expected to somehow have the ability to shake off the pain and fatigue more easily. Moreover, we are in the unique position of being stricken with a crippling blow right at the time in our lives when we are most vulnerable–starting out in our careers, usually in debt, with family and jobs depending on us to put in more hours and work harder than others because at our age we should be able to.

I’ve had success in my pain management with a complete overhaul of my diet, eating only organic foods (farmers market is way cheaper and better than the grocery store), eliminating most dairy and gluten, taking DLPA, malic acid, vitamin d, hemp oil (which has made my skin look AMAZING), a multivitamin (rainbow light womens one brand) and magnesium in the day; melatonin, 5htp and St. John’s wort (good for RLS/sleep issues and some depression) at night. Liftmode.com is a great source for 5htp and some other supplements, which come in potent, powdered forms which I like to mix with tea. Not saying you should do all these things just that in the body of my research I’ve found they have all been recommended for FM patients and so far I have seen improvement–not perfect, but definitely marked. I also bought a “bed of nails” mat and a theracane on amazon–there are different styles of each and they’re a little odd, but the purpose is to help relive pressure points within your muscles that may be contributing to your pain, especially if you have tender points or pain that radiates from a muscle knot outward or causes numbness. You may find the bed of nails too much with your skin sensitivity, but for me once I get past the initial discomfort it is extremely relaxing.

The book “Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection” by Celeste cooper was also very helpful to me, which is on amazon; you already have a good doctor but I found it extremely informative as it included information on mild exercises, ways to talk to your healthcare providers (good for me with my dismissive doctors), how to file a disability claim, info on positive self-image, etc. there is also a series of talks on YouTube by a doctor named patrick wood who is a fibromyalgia researcher that I found enlightening, I think the series is called “new insights, new hope” if you google it or if you just google Dr. Wood’s name he has several interviews that are very interesting and include a lot of information about the most recent discoveries about possible causes and proof of fibro.

If you’re a sci-fi or fantasy fan I’ve got all kinds of Netflix recommendations too. I hope you are well today.

Much love,
Curio

7

I forgot to mention that I also take prescription topamirate for what were previously intolerable migraines. I have read that an increased dose (I take 100mg for the headaches) has been beneficial in trials for fibro pain but have been frustrated at attempting to broach that subject with my GP, who doesn’t even know what fibro is and doesn’t understand why I’d want my topamax increased (she won’t give me tramadol or muscle relaxers for the same reason, though I’ve made clear I don’t want opiates). So when I get a flare things are pretty rough. Think all the heavy lifting included with my job has a lot to do with it. Anyway, I hope some of this info helps.

8

Teesa, can your dr refer you to a pain specialist ? toradol is just a glorified Motrin , works great for post op pain after surgery to help cut inflammation , but for severe chronic pain … Toradol won’t do anything . I couldn’t function with out my low dose fentanyl patch , it takes the edge off the pain, I refuse to let them increase it even though I’m still in pain , when I forget to put a new one on ( every 3 days) I wake up and can’t move, by day 5 if I had not changed it the pain is worse , so although its not a cure & I’m still in pain, it does help. I’m on the lowest dose they make…

Hope you can get some relief, it’s so hard to live with this pain, keep looking for a dr that can help you, I know your dr cares, but he just does not understand the magnitude of the pain. I had a few pain free hrs after waking up from general anesthesia last week, it was crazy, all I kept thinking was this is what it feels like to not have pain… I had actually forgot what normal feels like, but the amt of drugs I was given ,most people would be so sleepy, me … I just felt like wow I want to go shopping I didn’t want to waste the little time I had to feel normal, but I just sat and enjoyed those few hrs I had pain free . It was so nice , as the day went on and the drugs wore off the pain gradually returned and I was just shocked at how horrible I began to feel!!!
Hugs
dee B

9

Hi my name is Jeannie I have had fibro for 20+ yrs and as far as fair as pain goes the only way I get any quality of life is bring on Narcotics ist's a trade I am willing to make to be able to be able to function I'm on 60 mg twice a day of oxy-contin and for break through pain I take tramadol 200 mg. I am Australian so if you use narcotic you have to see a pain specialist once a year although you are micro managed by your GP throughout the year I also have morphine Injections that I am responsible for for my husband to give to me if one hitsf in the middle of the night we have a very trust based relationship with my GP but make no mistake I show any signs of addiction he will cut me off. I have been on narcotics for 10+ yrs and you can't keep pushing up the dose so you are never be pain free but you can get to the point where you are functional people wreck it for themselves. Narcotics can be a good thing it's not automatically your addicted, but monitoring is important and they are not for every body hope this helps Jeannie

10

Hi Tessa,

I feel so bad for you that at such a young age you have to go through this!! I was diagnosed with many other conditions in my late 20's such as IBS, asthmatic allergies, mild hypoglycemia and EBV. It was not until my 40's that the hypothyroidism came out, chronic cystitis and then two years ago I was dx with degenerative disc disease and Fibromyalgia. It has been a long road and a tough battle. I was always working and going to school and burnt myself out. I lost my job last year after going out on a medical leave. It was too much for me and I couldn't do it. I applied for the company's LTD which I was denied and I recently hired an attorney for SSD.

As far as medications...I know alot of people are on Cymbalta and is helping them. I cannot take any anti-depressants due to migraines. Narcotics do not do anything for Fibro pain!! I take Oxycodone for the herniated discs and sometimes during the day Tramadol. Although they somewhat help back pain...they do nothing for the Fibro pain. Frustrating!!!

I have also tried Lyrica and Savella with bad side effects that I had to stop them.

My heating pad is my best friend! lol Hot showers --light exercise (walking)---water therapy---massage therapy. Vitamin therapy...support group....

Just trying to think of different things. I'm seeing a Fibro specialist in my area in the next couple of weeks. He does not take insurance so my fiance is helping me pay for him. He has alot of clout with disability judges so I have no choice but to cough up the money.

I love Netflix too! lol :) I hope you find something that will reduce your pain and make you feel better!

11

Hope today is a better day for you Teesa!

12

i have been too tired lately to do anything. it takes a lot of work sometimes to just even get on here and say what i have to say or a few words. my hands hurt a lot lately. it stopped me from finishing my latest novel as well actually. and fibro fog doesnt seem to help. SO IN THAT CASE, im sorry if i dont respond back to all of you when you leave me helpful advice or just kind words. i dont have the time of energy to but i try to get around to it when i can. i more than appreciate all the feedback, advice, prayers, kind words, remedies, stories, and virtual hugs. it means the world to me. you guys are my FMily. and i dont have much support so it means more than you know. I ALWAYS read whatever anyone writes me. ALWAYS dont take it personal if i cant get back as soon as possible. im going through a lot.

THANKS EVERYONE

13

today is going by okay. nothing different than other days really. same normal pain. its bad when you can actually say youve gotten use to it. i wasnt able to hold the baby as much today or get out the bed much. im actually sitting in the bed now. its all due to being tired and the pain. thank you for checking up on me. i really appreciate it. im here and inbox me anytime. ive had worse days so im not going to complain. thats something that pushes me to the next day and helps me to have hope or just to cope with this. ive had worse days, worse pain, so im not going to complain. and i made it through yesterday when i knew i just wouldnt. so today im grateful. if i could do it yesterday i can do it today.... thats what i tell myself when im down. it helps. maybe you can try it too when youre having a rough day. it makes me lighten up on myself and not be so hard too..

love you SK Thanks again. i hope you are doing good. hugs

14

thanks LINDA. i appreciate you taking the time to give some advice and tell me some things youve tried. as for now, i take cymbalta, vicodin, and i have a heating pad that i loveeeeee. lol its my bestfriend too. i dont get out much. i would love to but i just dont have the energy or even want to go, in fear that i will be tooo tired of worse off later. my friends dont understand one bit and that leaves me to kinda push them away as well as dating because they dont get it nor do they think its normal for someone my age to be so sick and because they are uneducated on the illness they run away and leave me alone. i have more heartbreaks than a normal girl my age im sure. its another reason why i just shut myself away. i dont trust anyone, i cant depend on anyone, and i dont have anyone. its a tough life but its mine and i have no choice but to be strong and make it right....

i love netflicks. im into horror flicks, thriller, and sometimes drama but not often. i think ive pretty much seen everything on there. its getting boring now lol . i wish they updated it more. but then again i dont think no one but someone with a chronic pain and time has the time of day to sit there and watch all those movies lol. haha.

maybe we should watch some of the comedies. i hear that laughing reduces depression and puts you in a happier mood. it makes you feel good.

thanks linda

15

thanks Jeannie and yes it helps. i take pain meds and it helps to relieve some of the pain. if it wasnt for that i dont think i would be able to take it at all.

16

aww DeeB i know the feeling of forgetting what normal feels like. i sometimes feel bad for not caring more about myself when i was healthy. i feel like i took everything for granted. i often try to tell people to take care of themselves because you never know what might happen. fibro is so sudden and life changing. thanks for sharing that story with me, it made me smile. i can picture it in my head lol. i wish i could take a day off ya kno. lol

i hope you are having better days and i hope that things arent too hard for you today. hugs. love ya

17

I understand your pain and frustration. My doctor is finding it difficult to remeber that I have had my symptoms for nearly 10 years, yet just diagnosed last April! She keeps telling me get at least 30min of cardio workouta day!! Yeah! Right! I can barely get out of bed and I a suppose toworkout for 30 or more minutes! Then what?? Take a nap?? There isn’t a single spot on my body that does not hurt every minute of every day. When I have flare ups it is always in my back and left shoulder. My doctorhas me on Savella 50mg twice a day. She beleives that Fibro should be controlled by 1 med and no need for anything else. I can not get it in her head that my fibro is more progressed than this, I am beyond the working out, fight through it stage! That is what I have been doing the past few years while she has been trying to figure out what is wrong with me! I have a high pain tolerance, so when I tell someone i am in pain I truely mean it! I have 3 children, all were delivered natural with no meds what so ever…if that tells what my pain tolerance is!!!

Even though i can relate with you in regards to your pain, I am unable to provide much advice! I tend to hurt more with warmth and heat, so I use homemade ice packs on my back and knee joints. Sometimes the ice packs help with my shoulder and hip pain as well. I made them with 2 cups rubbing alcohol and 1 cup water in a freezer Ziplock bag. I added a drop of food coloring to make them “pretty” they do notfreeze solod, it is like a gel pack, and they work great! You can double the “recipe” for larger bags too. Many of the people on here have good ideas too! So keep posting discussions and soak up the knowledge on here!!!

18

I feel ya babe. Hope some relief is in your near future

19

I appreciate your feedback. Advice is nor always needed. Sometimes we just need a friend and someone to understand. I can see that you understand completely and its bittersweet. Im happy you so But sad that you fell the pain. My pain is really bad like that too. Many family refuses to believe it. My dad always say I’m too young to be hurting all the time. Its crazy. I feel like i live in my room lol.
Thanks for being there. That cold pack sounds cool and pretty. I would make some but i can’t stand the cold. It makes me hurt so bad. I’m different. I need heat to soothe me but i can’t stand being hot or sweaty. I know it’s confusing. Lol
Hope you have better days hin. And thanks again.

20

Awww Thanks Cayce. Appreciate that. And i very much hope so too lol