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New to this. Any advice? Fibromyalgia.

Oct 30, 2015 3:59 AM

Not actually been diagnosed with anything yet until I see rheumatology on Monday. I've looked at some of your profiles and they seem a bit worse than mine. When my doctor first told me what it might be I looked it up, and it said chronic pain, I see that as on the floor writhing in agony. But he said it's probably because I haven't taken any pain medication for two years and built my tolerance up, and I'm on anticonvulsants, to stop my muscles cramping and spasms. What do you think? I don't want them to say it's not fibro, and go back to the land of the unknowing.

Oct 30, 2015 5:32 AM

Your pain pic almost looks like mine. I haven't been diagnosed with it either but my whole body hurts 90% of the time. I have 3 (so far known) degenerated discs and spinal stenosis. Reading up in the lumbar stenosis said it can cause all the pain from my hips down. I only had the MRI done on my lower back. I am getting the rest looked at when I finally get into new Dr. The crevical stenosis can affect the arms and neck. Wish you the best of luck. Many healing and pain relieving prayers sent to you.

Oct 30, 2015 6:48 AM

You both need to find a Doctor who believes in Fibro or Fibro Clince other wise your going to be put through the ringer if had this now for 12 years and was the youngest ever to be diagnosed at age 25 so I've been through it just went through it again for more testing is just a waste of time and it hurts so you gotta find somebody in the field that will back you up good luck and need anything just message me. Fibromyalgia isn't just chronic pain there is a whole different ball game with it and messes up everything in your system from your head to your toes it's also how you deal near logically in the brain of pain cuz it's wired differently.I keep up with Mayo clinic system they have their own fibromyalgia clinic which is in Rochester Minnesota look up their I also watch Switzerland Medical. Into the tolerance of the pain medicine No is the answer you do not have a tolerance also I don't take man made medicines there poison to your system and that's common here for the United States of America in the medical field which we are the most behind and medical history we are in the land of the dinosaurs research outside the bubble there is this gentleman on YouTube that is it Dr in Florida which I am hopefully going to see this summer look him up to into the person that got the MRI done you can't find out then. In my eyes there's no real test for fibromyalgia besides them touching you I am second to the last stage of fibromyalgia I barely can drive anymore I have a lifetime scooter / wheelchair rest of my life the last stages never walk again reason why I'm saying this I've been through the major ringer in the medical industry and they're going to tell you nothing but lies are not believe you that you're a nutcase so please find a doctor or a clinic that specialize in fibromyalgia and go there so you do not have to go through the crap I went through and others

Oct 30, 2015 6:54 AM

Thanks, I gather I'm going to the right place then. It's diagnosed and treated at the rheumatology clinic here. I just need some sort of diagnosis, they can make something up for all I care. I can't go back to suffering with an unknown so nobody believes me. Everything rests on this appointment, my job, my future, everything has been on hold since May.

Oct 30, 2015 7:02 AM

Feel a rant coming on, I've been through so many MRIs, CTs, PETs, EEGs, ECGs... I'm surprised I don't glow in the dark. They couldnt find anything, so it must be psychological, went to so many counsellors, psychoneurotherapist, psychologist, all saying I'm depressed and anxious about a physical problem, then go for more scans, to come up empty. I'm going out of my mind, so I'll probably need more therapy or locking up. Grrr. Lol

Oct 30, 2015 8:29 AM

Be open to diagnosis don't get to stuck on the fibro. I have fibromyalgia diagnosed after having pain seizures and sporadic falling. Even medicated I still hurt terribly, probably because I have other issues that the fibro meds were not helping. I think most, if not all, people with fibro end up with numerous other issues including anxiety and depression.

Oct 30, 2015 9:47 AM

Yeah I agree with that, fibro is just the only one that's fits so far. Been diagnosed with allsorts but it never worked out. I just need a firm diagnosis of something/anything, so I can start moving on with my life

Oct 30, 2015 10:02 AM

Hi Scrossy, I hear you loud and clear.

I have not been diagnosed officially. Was told by 2 doctors I had it, then 2 docs that said it doesn't exist.

What Starr said is right on the money! You need to change doctors if you must until you find one that believes in Fibro and wants to get to the bottom of it.

I am waiting for an appointment with a rheumatologist, I saw one 7 years ago. All she did was give me trigger point injections of lidocaine and tell me to do yoga.

It's maddening not having a diagnosis. You really do feel over time like you're just nuttier than a fruitcake. Mainly because of the way you get treated by many doctors.

After 22 years, I have found my doctor that is with me on the same page 100%
In 4 visits he has done more for me than any other doctor in the past 22 years.

I'm praying you get what you need, so you really can get on with your life as you said.

Blessings ✌️💜

Oct 30, 2015 11:18 AM

Welcome Scrossy! I started with fibro in 2007 but wasn't dx until 2012. I'm under a rheumatologist. I now have 2 more AI issues; sjogrens & hypothyroidism. My sister told me last night she thinks I've had fibro much longer, from in my 30-40s. I'll be 54 next week, and I certainly can't do half what I did 5-10 years ago, let alone 15-20+ years ago. I was put on a cane/walker early this year for imbalance & dizziness. I'm now unable to walk big stores so I use their electric carts.

Educating yourself on what you think it is will hopefully help the doctor. But let me warm you, many diseases share many common symptoms. For instance, when they dx m sjogrens and hypothyroidism, I researched and found they also share fibro symptoms. Fibro's tender points are it's one specific symptom not shared. Check out some websites on various diseases: Arthritis (many kinds), fibromyalgia, Lymes, lupus, sjogrens, CRPS, etc. Have you listed your symptoms on a paper, with questions to ask? It's a good idea to focus on the specifics. I'll find some of the websites and share. One is fmnetnews.com. another is but-you-dont-look-sick.com.

Starr, I'm curious. You mentioned stages of fibro. Where'd you find that out, on Mayo? I'm wondering if that's why I'm slowly progressing to inability to walk far.

Wishing you both a blessed day! 🙏🌼

Oct 30, 2015 11:23 AM

It's a place to start, thanks. Been rapidly declining over the past two years. Used to walk everywhere, to bus stop 3/4 mile away, then home again every day, down the canal, to other side of Leeds or to Bradford... Now I can't get to the shop over the road. I feel 82 not 32

Oct 30, 2015 11:32 AM

We all do! It's like walking up one morning and finding yourself in a body decades older! Lol 🙏🌼

Oct 30, 2015 4:55 PM

Hi all,
I'm filling up here as I read your posts..... Because I am in sooo much pain right now and to think about all of you. My heart goes out to all of you!!! I would also like to know about the stages of fibro. I haven't really read anything about it and " oh my GOD, please don't tell me that I'm going to get worse"

Oct 30, 2015 6:58 PM

Aunnie, I don't know about stages. I'm curious on that too. But I do know I'm much worse now than when I started having actual fibro symptoms in 2007. I don't know if it's just because of the fibro, or because of so many other coinciding illnesses. Maybe it's both. I got up feeling good today. Got my shower and drove to the pharmacy ( a small store). I was halfway to the bac, on a cane, and thought, "oh my gosh, am I going to have the energy to even make it back to the car?!" There was a line waiting and by the time I got back to the car my right hand was trembling like crazy. When I got in my house I collapsed in the recliner. I guess I used up all my spoons today! 🙏🌼

Oct 30, 2015 7:05 PM

Flappys, I know what you mean. That happens quite often to me. I'm scared of this getting worse. I am on the top meds for fibro( or so I think) and what if there is nothing else? I guess all I can do is pray and take it one day at a time. Much luv , aunnie

Oct 30, 2015 7:17 PM

Aunnie, I any take most of the typical fibro meds due to allergies. I'm hoping my pain doc will let me try gabapentin, at a low dose. For the past three weeks the outer-back of my upper end are extremely sensitive to the least touch, painfully so. It just started out of nowhere, so I have no idea, but it's spreading down the arms. 🙏🌼

Oct 31, 2015 5:07 AM

Star I have never heard of stages of fm, where can I find that info moshell

Oct 31, 2015 6:23 AM

I'm on Gabapenten. 2400mg a day. It helps with cramping and spasms, but not a painkiller.

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