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Losing Hope
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An_257289 posted:
Hi everyone. I had been diagnosed many years ago with fibromyalgia and chronic fatigue but never thought it would get worse throughout the years, in fact I thought that the orthopedist that diagnosed me couldn't find answers to my joint pain and just labeled me. Some of the questions that I have for the community is;

1. does anyone get little shooting pains throughout the body like a toe or a finger or shoulder blade or whatever ( I randomly get shooting pains)?

2. Also does anyone feel flulike symptoms like tender skin (if anyone touches my skin it actually hurts) like when you have the flu and everything hurts.

3. do you lose your appetite, get weak, and ache all over? Also can you have lower back pail that shoots pain down your legs throughout your muscles that take your breath away?

4.when you have a flare up or attack how long does it usually last; few hrs, days ?

5.what helps for the pain? Tylenol and or motrin barely relieves the pain but I still feel sick all over.

6. Can eating dairy trigger this?

7. What can trigger this and if stress triggers it does it happen shortly after being stressed or can it come on weeks after a stressful situation?

I have been seeing a naturopath in conjunction with conventional doctors including a gi dr. for irritable bowel that
has made me sick with indigestion and reflux but will soon see a rheumatologist for the first time. I am on a lot of different supplements and alternative medicine but still everything seems to be a mystery. Things help for a while but then the fatigue and/ or pain and stiffness comes back. In the morning I feel like im hundred years old (im only 46).

This winter was brutal on my body from the cold. Heat gives relief but I still hurt. I am sick of not getting straight answers, resolutions, and sick of hearing myself complain all the time. I have had epsteine barre in the past, low white blood count (3 blood tests about several years apart have always showed a low white blood count, vit. d deficiency, and mom has been tested positive for lupus. I have been tested for lots of stuff including lupus, celiac, lymes and everything comes back negative. I also have osteoarthritis lower back and feel like its all over. Hands hurt, stiffness, numbness in hands, arms and tingling. Can Fibromyalgia hurt this bad and cause weakness, nausea and fatigue (like someone drained my body of everything)??

I really want to feel better. Im getting depressed and hopeless cause everyday is a challenge. I miss the old me full of life, energy and I am angry when people don't understand and think im just complaining.
I have every single symptom listed but the symptoms tie into so many other medical conditions that im really confused on what I really have.
Thank you for letting me vent. Don't know what to do for diet, exercise, lifestyle changes especially that I have at least 20 more years of working. PLEASE HELP! C.

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clurkin responded:
You poor thing! I have had fibromyalgia for 19 years, it started when I was pregnant with my son. I first saw a doctor because I was aching and tired all the time, and I had trouble getting up when sitting on the floor - something I did a lot of with my toddler. The first doc I saw said, oh, you have depression, I said, do I? After weeks of taking prozac and feeling no benefit, I saw another doc and was diagnosed, correctly this time, with fibro. I have suffered all the symptoms you describe, along with lots of others (not all at once, thank goodness!) At the moment I am seeing a physiotherapist, which has been very helpful. I had one setback when I tried to step up some strengthening excersises she gave me for my back, and had to rest up in great pain for a few weeks, but now I'm back on track, and I have been able to cut back on the amounts on painkillers that I take. I find Mefenamic acid to be effective on lower back pain - feels like 'inside pain', spasming, like labour or period pains. codeine is good to take occaisionally if nothing else helps, and also ibuprofen as long as you remember to eat something when you take it, otherwise you get stomach troubles. I use Heat packs, and hot water bottles, also 'deep heat', which is a menthol rub that heats your skin and soothes pain. It can be beneficial to alternate heat with cold, so i also use gel packs that you freeze, and 'deep freeze' - a menthol gel that cools the skin and muscle.

One thing you could try that my physiotherapist told me - Stand straight with your back to a wall, feet slightly apart, and put a small foam/rubber ball or tennis ball between you and the wall, towards the top of your spine. GENTLY lean on the ball, bending and straightening your knees slightly, to run the ball up and down against your spine. Only do this for a few seconds at a time at first, that's all you will need. What this does is stimulate the sympathetic nerves around your spine and towards your shoulders, arms and hands. This has helped me with the sensation of coldness and pain in my hands and shoulders. I really hope that I have helped you. Please don't give up trying, it is hard, but you can live with this
 
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heatherx responded:
I could have wrote all this myself it is just what i am going through, with exactly the same symptons. I am just starting down this path, being recently diagnosed with fybromyalgia......its hard but depression is your worst enemy, it will make your pain so much worse...please see your doctor and get your depression sorted and ask for a physiotherapist to show you gentle exercises to help you
Good luck hun
 
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missist replied to clurkin's response:
Hi An_257289 It does sound pretty much like fibro to me. I've had all those symptoms too. I guess currently though it is better.


When I was younger I had many years where I felt like my body was just covered by a shroud of pain. As if I were just plain wrapped in pain. I also at the same time would have active areas where the pain was much worse.

At some point the shroud of pain lifted and I can't say it was anything I did---it just stopped. But I would still get acute areas of pain--and the main way to stop that was a little gentle stretching- doing exercises I learned in PT but not near as many reps as I was taught--- that was just too much and would make it worse. I also learned to REST that area. Which some of those areas are chronic like my neck/shoulder, wrists and hips/ SI joints-- those I have to always be babying. I use wrist supports very often, sleep with them also many nights; I rest my neck with a foam collar most days for awhile. Not all day. Heat helps I have a hot rice bag that drapes over my shoulders and goes around the back of my neck--sort of like a small prayer shawl.

I also use RX meds. This is a struggle for me as I'm always changing meds it seems but my body I think has responded to them at times and then at times their job was done.

I use Gabapentin quite reliably--it helps me sleep like a log usually; and it is a help for a 'layer of pain' I think of pain relief that way--- you get some from this and that but their is no one thing that just takes it away.

I am trying Cymbalta (generic) but I'm not sure I"m on board with it yet.

For a long time I took Celebrex and that did a great job lowering pain level that was due to any inflammation in my body--and doctors can say otherwise---but there IS inflammation I believe connected to fibro--maybe in the muscles? I don't know but many of us also have OA someplace--especially in the spine-- (neck/lower back..etc) so it helped. That is a spendy one as is Cymbalta--but for the time I used it- it was fantastic.

I think those periods of getting pain relief from something used even if you discontinue it--it seems like there is a lower pain level overall that stays around. At least for me.

I needed to get the whole mess 'turned down' and I did.

Now it is more of a matter of pacing than anything else. Which I do have a slow pace--but I have a Ton less pain.

I hope something I said is useful.
Mary
 
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missist replied to missist's response:
An_257289 Oh--- just adding this-- I agree with heatherex too-- you may find that treating depression will help a great deal. It won't be a perfect solution but if you can get a dr. to help you with that and with something for pain -- I started with a combination of fairly low doses of these three things:
a trycyclic antidepressant
gabapentin
an NSAID ( I used naproxen at first; then celebrex as they are gentle on the gutt)


Even using these things for a year or maybe more or less--- it can rachet things down for you-- that's how I felt anyhow.


Also Vitamin D of course and the B vitamins are also good-- I found some energy from B2.




I love natural remedies but for me personally--- I needed a kickstart of stronger things to start.
Mary

 
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melpom responded:
Your post sounds just like my story. I wish I could give you some answers. I continue to try to find the answers. I keep thinking that there is something the Drs. are missing. If only I could figure it out. Each time I try to find out what is going on I get a new diagnosis. I do the following... Vitamins, supplements, exercise, meditation, sauna, chiropractor, massage. I have the following: depression, anxiety, thyroid disease, FM, and CF. I am 46yrs old. Wish you a day with less pain. Hope you find some answers soon! Take Care!! Mel
 
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brokenmom2 responded:
Your post sounds SO familiar! I could have written that!

I have been battling depression for 30 years now and can tell you that finding a therapist that specializes in counseling patients with chronic conditions will be well worth every penny spent!

I can't really offer much advice, other than do allow yourself to grieve for your lost past life. I've allowed myself that time, and I think I have finally come to the other side. This is a new journey that I have to learn to live. I am learning my physical limitations while knowing what I need to do for my mental well-being. Yes, I feel like crap some days but I strive for a positive outlook as much as possible. I found a support group where I can vent my complaints so that I am not constantly complaining to my spouse or friends/co-workers. I have also been lucky enough to FINALLY find a doc who know/understands about FM.

While I may not completely know who this "new" person is, as of yet, I have chosen not to let FM define who I am.

Gentle hugs to you! Wishing you the best!
 
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katmandulou responded:
Wow, An_257289, you've been through a lot. It sounds like FM, but the rheumy (I'll assume a man) will be able to tell better. Since FM is not an easy diagnosis, know that he will do a physical exam see where you're sore and how sore, he'll have blood drawn, and might send you to PT or OT. I was 18 months from onset to diagnosis; many people here went longer or are waiting longer.

A for your list, some things I've never felt, and god knows I've never lost my appetite! A flare can last a day or a week for me. If you have dairy allergy it can trigger a flare, as can stress of the any type. My rheumy said that all of us in the northern hemisphere are Vitamin D deficient; you should be checked and told to take supplements.

When you see the rheumy, take a list of all the meds and supplements you're taking, the doses and how often you take them. You want to make sure you're not taking something that counteracts another.


I have to ask: what has the orthopedist done for you? What tests did he run?

NOTE: What works for one of us won't necessarily work for another. What I do and the meds I take might not help you.

I wish you the best day you can possibly have,
Lou
 
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500pumpkins replied to clurkin's response:
Thank You And It's Funny Cause I Have Done The Tennis Ball Trick Not Even Knowing This Was An Exercise And It Does Give Relief. Also When You Mentioned Cold Arms And Shoulders I Would Have Never Thought That Was Part Of FibroAs Well. Im Always Telling My Bf To FeeL How Cold My Arms And Shoulders Get ( It Could Be 90 Degrees And Parts Of Me Are Like ICe!
 
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500pumpkins replied to missist's response:
It's Funny Cause Im Seeing Pieces Of The Puzzle In EveryBodies Story; The Osteoarthritis Is In Lower Back That Started About 7/8 YRs ago Too. And HeatGives Relief But I Think It's Time I Get Some Pt To Help Stretch And Warm My Tight Muscles. Thank You. Carla
 
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500pumpkins replied to missist's response:
Actually I've Been On Paxil For Many Years But Have An Upcoming Psych Appt. That I Will Mention All Of This To And See What He Says. Maybe Adding Something Or Trying Something New. And Im Glad You Mentioned Vit B.C. That's One Vitamin Im Not Taking Yet. Thanks As well
 
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500pumpkins replied to katmandulou's response:
I Have Not Seen An Orthopedist In Many Years But When I See My New RheumAtologist I Will Mention All Of This And See What He Recommends. I Guess A Lot Of This Will Be Trial And Error; What Works And What Doesn't Till I Find The Right Conconction Of Relief. Thanks.
 
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katmandulou replied to 500pumpkins's response:
Hi 500pumpkins:
This is a wacky thing, FM, and my version doesn't have to match yours. You might find help for stiff, sore, inflexible muscles in yoga. I found a teacher who (at the time) had a class that was solely for people with mobility problems, working through recovery from illness, injury or surgery, PT, etc. I embraced it, and gently transferred to a "regular" class, adapting as I need to. If you're interested, find a studio have a chat with the instructor. It can really help!
Lou


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