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feeling alone,tired,pain,frustration :(
7 Replies
slb71 - November 1

i am new to this forum and have not been diagnosed with fms but my dr. has discussed it with me. she has not tested me for tender points but i have sooo many of the associated conditions listed on the home page as well as many of the symptoms.

dr. has me on cymbalta and lamictal xr for crazy muscle twitches and mobic after a carpal tunnel surgery, and i take zipsor for pain which sometimes helps and sometimes not. i have tingling & burning sensations all over my body several times throughout my day. when i am stressed the pain starts in my head & works its way down my neck into my shoulders, arms, hands. the pain in my legs and hips is strange. i only feel pain in quarter sized spots in different places throughout the day.

i have experienced what i feel is fibrofog. i don't feel as bad now but the forgetfulness and inability to concentrate still hang around. i am a manager with 11 employees under me. they have been great in being patient with me but i drive myself nuts!!!and i am afraid they too will feel the same eventually.

i have endometreosis, osteoarthritis, carpal tunnel in both hands, symptoms definately are magnified before i start my period, i am b12 deficient, have almost constant pain in neck head & shoulders, however that has improved since taking meloxicam (mobic). i don't sleep well at night and yawn all day long. i could nap many times a day. i work way too many hours but don't know how to cut it back right now especilly with the holidays approaching.

i have gone on more than i intended too. just really needed to vent. want to hear opinions about whether or not anyone thinks i could have fms???

 

Stacey373 - November 2

Hi slb71 - It sounds to me like you could possibly have Fibro. It's something that you should definitely talk to your doctor about more. There's no real test to prove you have this and because Fibro mimics so many other illnesses, usually a doctor will rule out everything else before diagnosing Fibro. One thing you can have done is to get a blood test to check your Vitamin D level. Most fibro sufferers are Vitamin D deficient.

I have ALOT of problems with my head, neck, shoulders, and arms. I get alot of headaches and migraines and I am always worse during that time of the month. But I also have problems with my lower back, legs, and feet. Fibro is a condition that affects all 4 quadrants of the body. Doesn't have to be at the same time, but you do have to have ongoing chronic pain that affects your whole body.

Pushing yourself, doing too much, and stress will only make you feel worse. One of the hardest things for most of us to learn is not to "over do it" and to accept that we can't always keep pushing our bodies. I've had this for YEARS, but was diagnosed in December of 2009 (almost 2 yrs ago) and I'm still trying to figure out what's "too much" and how to deal with all of this. There are also things that I do that I know I will "pay for" later....like taking my kids Trick-or-Treating the other night....I couldn't move all day yesterday and today I still feel like I've been beat up and now I've also got a headache. But I knew this was going to happen and I guess that's one of the "sacrifices" I make for my kids and family.

anyways.....what I'm trying to say is that if you have Fibro, you will have to slow down and not push yourself to do too much. You might have to start thinking about cutting back on your hours at work too....you have to always remember that your health should come first and learn how to say no when you need to.

Fibro also affects your sleep. One thing that you should talk to your doctor about ASAP is getting some sort of sleeping medication. It is VERY important to get the meds and get the sleep that your body desperately needs to heal itself and it will help you to feel better through the day too.

That's all I can think of to tell you for now...I'm sure someone else (like Fantod!)will be on here soon to explain this all better. Welcome to the forum! Feel free to ask questions, give suggestions or advice, and just vent if you need to! Take Care, Stacey :o)

 

slb71 - November 2

thanks for your input stacey373. i know i should talk to my dr more but i don't always tell her how i'm feeling. i do like her i just get unsure of myself i guess. i'm afraid she'll think i'm a hypochondriac. i'm not a person to complain but it seems like that's all i do anymore especially when i seem to just keep adding symptoms all the time. it's so frustrating. when i try to explain my symtoms to family or friends they look at me like i'm crazy while attempt to be supportive.

i am so tired of being tired and all my dr told me to take is tylenol pm only after i've had 2 nights of not sleeping good - well that's every night & it doesn't seem to help. i felt so alone for a long time & this forum has let me know i'm not alone! that i am truly thankful for!

 

Stacey373 - November 2

Hi slb - I totally understand not talking to your doctor about everything because you don't want her to think you're a hypochondriac! That's exactly what I did for years, but I later learned that was a huge mistake!

You NEED to tell her EVERY thing that is going on with you. My advice is to write it all down...every symptom, every associated condition, every place you are having pain and problems. I would also print out the description of Fibro and highlight all the symptoms you have and give that to her. That's what I eventually ended up doing and when I confronted my doctor with it all, she totally agreed with me and I was FINALLY diagnosed.

With Fibro, over the counter medications DO NOT work and you will only end up harming your body more. That's one of the major reasons you should get diagnosed as soon as possible so that you and your doctor can handle this illness the right way. If your doctor doesn't want to prescribe you the necessary medications, then ask for a referral to see a Rheumatologist who specializes in Fibromyalgia. A specialist will be able to help you better than a regular family doctor.

This illness doesn't just affect you physically, but also mentally. Another medication you should be taking is an anti-depressant. Cymbalta is the one they usually prescribe because it's supposed to also help with the pain associated with Fibro. but alot of us can't or don't take that one...it doesn't work that way on everyone...so if it's not helping you, maybe you should talk to the doctor about trying something else.

and finally...you are NOT alone! I know this illness is extremely isolating and it seems that no one understands what you are going through on a daily basis. My husband tries to be supportive and sympathetic and has even done some research about this illness to help him better understand....but he still can't completely understand what I really go through and no one can unless they have this illness themselves.

That's why this forum is so great....everyone on here understands what you are feeling and can validate all the problems that you might feel like at times are all in your head and not real.

Please keep in touch and let me know how you are doing...Stacey :o)

 

slb71 - November 3

thanks stacey for your encouragement!it is very much needed!

the dr i see is a neurologist which is one reason i think i feel hesitant to speak up. i think i'll try what you have suggested for my next visit in 5 weeks.

thanks again, stacey!!

 

dippydee - November 3

hi slb71, i have recently been diagnosed with Fibro, although i don't have as many of the symptoms (Yet!). I know how you feel about talking to your doctor - i was always putting off going - then my lovely?? partner told me i was like an 80 year old (i'm 48) and that spurred me on to really talk to her and explain everything i feel. I consider myself very lucky to have been referred really quickly to a rheumatologist and i know its not always easy, but i think you should try and push your gp for a referral. Good luck and take care x

 

mjosies78 - November 7

Hi -
I am new to this forum as I have recently been tentatively diagnosed with FMS. I ended up seeing a Physiotherapist because I ended up in the ER with shoulder pain and neck pain that made me virtually immobile as I could not move without grimmacing. I get so frustrated when someone asks me where it hurts; when did it start? I thought I was crazy because I would start to tell them where I thought it started hurting and ended up all over the place. I was starting to feel like I a hypochondriac and I was sure others thought I was. Looking back, knowing what my diagnosis is, everything starts to make sense. I've had issues since I was a teenager really. I'm 32 years old. I suffer from major depression, anxiety, ADD which I've been treated for off and on for less than 20 years. The ADD was a recent diagnosis and the addition of Adderall had a profoundly positive impact in my life. I used to have a hard time focusing on anything although I had the ambition I didn't have the energy and would often get frustrated at myself because I couldn't do what I wanted which then lead to an increase in depression.
In recent years I've had issues with a gnawing pain in my shoulder, neck, wrists and hands. I ignored it for the most part thinking it was in my head. Last year I worked in sales and (for a healthcare company) found myself working 100 hours a week. I was surprised at my ability to work effectively for such long periods of time however this is when the pain in my shoulder and wrists started to become an undeniable concern. Then my grandmother passed away; she and I were the best of friends, sometimes closer than she was with my mother and the rest of her children. In many ways she was my rock, the one person I knew I could always talk to or go to with any problem I was having. Her death hit me harder than I ever anticipated and quite frankly my health seemed to go hill fast following her passing. I went to therapy and saw my Psychotherapist and kept telling them that I just couldn’t get to a point where I was prior to her passing; not only mentally but physically as well. I then started having significant stomach problems that caused me to lose almost 20 pounds. While I was happy with the weight loss I knew it wasn’t healthy and the constant stomach pains/nausea was becoming unbearable. I ended up having an endoscopy (I have an erosive esophagus) and a colonoscopy. The ultimate diagnosis was IBS. I was SO upset at this point I started to get really down. I am sure you have all felt this way…you don’t want there to be something serious wrong but when tests keep coming back normal or without significant concern everyone begins to doubt you. Often times I’ve felt that my Dr. was laughing at me and/or not taking me serious. After my most recent visit he finally sent me for more blood work (all normal) and then to the Physiotherapist. When I tried explaining everything to her she was much more accepting of all my symptoms as a whole and it was she who finally mentioned FMS. She sent me to have an MRI. The day I was to get my results I first went to a PT evaluation appointment for a half hour. By the time the woman was done having me do the hokey pokey I was sore and irritable (Because she kept asking me where it hurt and again I couldn’t pin point where because it felt sore in so many different areas). At the end of that appointment I went across the hall to my Physiotherapist follow up. She said my MRI results showed mild arthritis in my shoulder but nothing else, I started to cry, again not because I want there to be something wrong but because I was really starting to feel like I was going crazy. It was at this point she said she is almost 100% positive I have FMS, especially when I started to tell her about my short term memory loss and what seemed like a significant decrease in my cognitive skills, she was convinced. This was the first I had ever heard of Fibro Fog. By the time I left her office I was in significantly more pain than when I started and about an hour and a half later I was unable to move my head at all with a burning in my neck and shoulder. She told me to go home and take a muscle relaxer and a klonopin. She has also prescribed me Neurontin which I have yet to get filled. Her advice to me at this point is to take the Neurontin, Klonopin and muscle relaxer to get through the pain. I have yet to try the combination primarily because I wanted to do some research first. I want desperately to find ways to control my symptoms without having to be on more medication, but after spending the weekend in pain, I’m not sure that is really an option. I’m currently on Wellbutrin, Adderall and Klonopin for my depression/anxiety/add. I’ve since been given a Skelaxin (muscle relaxer in place of Flexeril as it makes me drowsy), Relafen and Neurontin. We’ll see how the Neurontin works. I’m hesitant to even try Lyrica – I was once prescribed Cymbalta as an antidepressant and it made me feel terrible. I also have the worst self esteem in the world and try to avoid any medication I know or believe will result in weight gain. It’s all such a vicious cycle…I hurt but I know I need to work out both to make myself feel better and because it’s ultimately helpful for FMS. But when I work out it makes me hurt so I’m only able to do it a few times a week. I’ve been getting more and more frustrated at my inability to speak properly; forming sentences and finding the right words has become a real concern. I am now working as a Provider Relations Representative for the same Healthcare Company, I have to be able to speak eloquently and effectively, lately I can do neither. I’m trying desperately to not to let everything overwhelm me and bring me down but I feel so defeated. While it’s nice to finally have a diagnosis that helps to explain years of pain and confusion, it’s difficult coming to terms with the fact that there is no real cure and I will be fighting this for the rest of my life. I’m sorry this was so long and pretty random and rambling; I just wanted to get my story out there. I also want to thank everyone who posts on here; I’ve read so many comments that have given me more hope than I’ve had all along. I’m in the beginning of my diagnosis and early stages of my research, but I am a fighter and I will not let this beat me. I am determined to overhaul my life, a complete change of lifestyle is necessary. I know that (for me) increased stress results in an increase in my FMS symptoms. I’ve started to remove the stressors in my life that I have control over and I’m working to better manage the stressors that can’t be removed only controlled. I’m looking to overhaul my diet and find an exercise regiment I can effectively follow and maintain.

 

slb71 - November 8

mjosies'

i am so sorry to hear of the passing of your grandmother. i have recently lost my grandfather and my brother so i definately can sympathize.

stress is absolutely the one thing that gets my symptoms going more than anything else. the burning and/or pain in my hands, arms, shoulders and neck are the worst. then it goes all over.

i too have been to doctors who don't know what to do with me and been to the e.r. a time or two & still no test ever shows anything except i am b-12 deficient which can cause nerve damage.

i have spent thousands of dollars doing all the tests my drs have ordered & it is frustrating.

i too have forgetfulness and often have a difficult time find the right words or finishing a sentence. i have felt alone for so long & that's the reason i have been thrilled to find this forum where we can vent, share, be informed, and know that we are not alone!!

sounds like you are doing a good job of relieving your stress. i struggle with that being a single mom with 2 teenagers!

thanks for sharing!
take care & stay strong

shannon

 

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