I was told that I have this (fibromyalgia is one of the disorders but I don't have enough "diagnosing criteria" according to my rheumy). No tender points, depression/anxiety, no GI problems, no face/neck/shoulder pain, no sleep problems, no chronic fatigue (only during flare-ups) etc...
Anyway, I am trying to get this diagnosis removed from records as I completely disagree with the diagnosis. If I truly had the symptoms I would be inclined (obligated really) to agree and would be more than happy to receive treatment for it (as if the doctors want me to feel better more than *I* want me to feel better!!). I feel it's hindering my progress in finding a diagnosis (and therefore treatment) because it gives the doctors something convenient to chalk everything up to.
My question for anyone here is do you feel that you experience pain more acutely than before your symptoms began or moreso than other people? Has it been explained to anyone this way? Has anyone gone through labor with fibro or any other "pain disorder"? Do women with these conditions experience more painful labors? Do cuts, scrapes and bruises hurt worse with this condition?
My doctor recommended more aerobic exercise (I was jogging up to 50 miles per week when I got the flu and "never recovered". Obviously I had to stop running against my will). I find however that the more I exercise the weaker I get; is this common with fibro and other pain disorders? By my neuro's exam I have "weakness in both upper and lower extremeties with a giveaway type of quality". Is this type of weakness common in fibro?
I am 28 years old. After one flare up I had to use a cane for two months due to severe weakness in my hips (literally couldn't stand up from sitting in a chair without assistance) and shoulders. I gradually regained strength in my hips (I still shake when I get up) and no longer use the cane but my shoulders never recovered. My right shoulder especially. Is this common with fibro and pain disorders? I never had much pain in my hips just weakness.
I have never had x-rays, MRIs or emgs done on anything to make sure nothing else was going on. I had a chiropractor tell me once after looking at my x-rays (this was three years before my health took a dive) that he doesn't know how I can even stand to walk during pregnancy (because of my sacro-iliac joints; they swell periodically and become inflammed). Yet all I've had done is blood work (of course they can never get me in *during* a flare!!).
I am honestly curious if fibro causes these things. I'm not looking for someone to say what I want to hear but for some honest replies (be brutal if you have to ).
I posted about a year ago here I think (may have been a different board) but I'm not any further ahead than I was and I have even more questions now.
I am having recurrent miscarriages and menorrhagia now as well and I don't know if it's all related or not. Very frustrating. I'm in the process of switching to a different PCP but am still stuck with the same rheumy. I seriously think it's my thyroid even though my labs are coming back normal (hypothyroidism is incredibly prevalent in my family).
If anyone can help me with any of my questions I would appreciate it! My rheumy told me (I asked him how it could be possible) the reason I don't have any of the symptoms of a hypersensitivity pain disorder (outside of joint pain) is because "the condition is poorly understood by patients and physicians alike". Just wondering who made him the expert .
sorry to say your doctor has a point. this reality is so confusing to everyone involved. i am hypersensitive now to pain. i used to watch the needle go in for blood tests and never flinch. now i turn away, warn the person with the needle and i always jump and make a tiny sound. i went from wonder woman to wimpy woman.
doctors do not have answers for us yet. the scientists are working day and night to help us. one day they will. i had a doc tell me once that for every 12 new conditions realized they find an answer for 1. having worked in the medical world at one time in my life i know the truth of it.
i have been in and out of wheelchairs. on and off a cane. fall on my face. some days i can skip, some days i can barely walk. i had a hysterectomy at 29. many of the younger kids here still bleed and may be of help to you. miscarriages wound the mind. i know. i was lucky to get the one son i have before it all had to go bye bye.
there are tons of doctors out there. keep searching till you find the words that ring true to you. you will know and you will also know if you choose to ignore them. i tried that. waste of energy.
oh yea, duh! go thru the old threads and find the one called "the list". i think you will find many answers to your questions there. my hips often shoot bits of glass thru my brain. my hips never went back where they were supposed to after childbirth 27 years ago. still in all, i can do it. after all, each time it hurts so bad i want to scream i remember birthing my son and the pain seems so tiny in comparison to that little watermelon baby. the pain reminds me and it know it is worth it. i like finding happy memories to offset the pain with. by the way, what does your gyn say about all this?
ps. me again.
you will have to change the pattern of your exercise program. try a p.t. first to learn healthy ways to strengthen your changing body. i do p.t. about 6 months out of the year. baby steps will bring you to a level of stamina you will be able to learn to live within.
time to take my body for a walk.
Hi, I too have hypersensitivity to pain, light, sound,vibrations, touch. My pain is not as bad as it has been in the past. I haven't used a cane or a chair. I have a lot of problems with chronic myofascial pain and after having alot of injections and physical therapy, now I have myofascial release and adjustments once a week, twice if I do too much at my chiropractor's office.
I also used to run and was in aerobics classes and am just starting to take walks after a year. I am 44. I had my twins before I had fms. My daughter has Chronic fatigue syndrome and you and her share a lot of symptoms. I get fatigued too, but she has it more often and to the point where she is about to faint with minimal exertion. I do not have GI problems. I thought that the tenderpoints were the main diagnosing criteria. However it is a central nervous system condition. I have 18, but didn't know it and they don't all hurt at the same time. My flares are fatigue and deep muscle pain. I didn't have much of a problem getting enough sleep, but now find it difficult to sleep more than a few hours at a time. I am weaning off of meds though so that may be why. My other symptoms are fibrofog which has improved immensely and I get overstimulated and have to be alone in the quiet sometimes. Yes pain hurts more. I hope I helped. Sorry so "choppy". In a hurry.
Hi Kelly - I'm visiting here because I was told 3 years ago that my trigger points were all tender (ouch!) and now hurt more. I was dxed with lupus about 6 years ago. There's a syndrome that your can read about on the lupus thread - a sticky about Anti-phosphiolipoid (sp?) syndrome at the top of the thread. Not wishing that or lupus on you, but your statement about multiple miscarriages made me think of this.
I also had an allergic reaction to Celebrex that caused the joint pain and swelling, shakiness, and weakness that you describe. I stopped taking Celebrex and those problems went away. I throw this in just in case you're on Celebrex or any Sulfa drug and may suddenly be allergic like I was and am.
That's just it though, I do not have hypersensitivity to pain...at all! In fact I have an extremely high tolerance for pain.
I also am not chronically fatigued. Between flare ups I have normal energy levels (flare ups last about 2 weeks and come about every two months with mini-flare ups just before my period).
I am also capable of tolerating activity very well. It's after the activity that I have so much difficulty with weakness (not fatigue but weakness).
Donna, I do not have any sensory (light, noise, vibrations, touch) hypersensitivities either. None of these things bother me in the least (even *during* a flare up).
I don't know how I can be diagnosed with a hypersensitivity pain disorder without any hypersensitivities to pain !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
bluelakelady, my gyn doesn't want to see me until I've had my first period. Other than that he's relying on my PCP to do all the testing.
I really do not believe I have this condition. I feel badly for those who do as it can be so severe. I am *thankful* that I do not have this!! However, there is something else going on and it needs to be investigated.
Thank you for your kind replies. I will check out "the list" thread.
Hello Barbara! Thank you for the suggestions! I have been begging my doctor to test me for APS since my second miscarriage but they won't. I have no idea why. To appease me the rheumy ordered a test for one of the seven phospholipids (cardioplin); it was negative.
The one I really wanted testing for *was* ordered by my regular doctor (lupus anticoagulant) but the lab got confused and did a lupus panel instead (which I was acually thankful for the mix-up at the time because that was another test I requested that they wouldn't do ). It came back fine.
I was on Mobic for a three days (also a cox-2 inhibitor) and it caused an upper respiratory tract infection. The pharmacist told me to stop using it. Besides, I was breastfeeding and the doctor (actually a PA) prescribed it anyway. The pharmacist said to stop taking it or stop breastfeeding. I listened to the pharmacist.
I looked at "The list" and wonder if there's anything that *isn't* listed there. Those symptoms encompass every endocrine and rheumatological condition currently known! I would think *every* American would qualify as having a hypersensitivity pain disorder as most have at least several of those complaints . There *has* to be something more defining. Don't people with these disorders at least have one thing in common that is always true across the board for everyone? If not then how does anyone know what they're dealing with.
I was dx'd with FM in March of 2002, and I just wanted to add my two or three cents here.
Yes, the "List" DOES cover a lot of symptoms, however, most of us have these symptoms to varying degrees, these symptoms on the "List" also include a lot of the same symptoms of Chronic Fatigue Sydrome (I have that also). It used to be believed that the common denominator for FM was the "TENDER POINTS". Please do not confuse these wtih "TRIGGER POINTS". They ARE different. Search the .Net for more clarification on these two. But basically us Fibromites have "tender points" which are exactly what they sound like. Certain points on our body that are "tender" to the touch, they usually "mirror" themselves, in that you may have a tender point inside of the knee (very common one) you should have one in the same spot in the opposite knee. There are several sites on the .Net that show pictures of the most common tender points for FM. However, the "tender point" test as the defining facture in diagnosing FM recently has come under scruteny (sp?). Used to be you had to have all 18, now they say you can have as little as 6 or 8 or NONE. Also, new research has said that there really isn't a set number of tender points, they vary. I subscribe to a FM quarterly newsletter, and always share any new research, new meds, or new treatments that I find in the newsletter or on the web. Tender Points used to be THE determining factor in FM, but some people, this is rare tho, just don't have them. Most commonly tho, you do have them and they will vary from time to time. The most intense tender points are inside the knees, inside the elbows, upper back, and sides of your neck. Like I said there are pics on the .Net that show them. Now, a lot of folks confuse "tender points" and "trigger points". They ARE very different. "Trigger Points" actually become inflamed. When DonnnaMarie spoke of "release therapy" that is due to her Chronic Myofacsical Pain Syndrome which is where the trigger points become inflamed so badly you experience chronic pain. I'm not talking about the occassional "knot" you get and go to a massage therapist to have them work it out, these are always there, swollen and extremely sore to the touch, and the only relief is either what Donna is getting, topical creams or numbing agents (like lidocane) or injections directly into the inflamed trigger point. This is pretty common. I get them on my lower back, in my groin, and all over my upper back. You can feel the "bumps" that are caused from them being inflamed. Trigger points are actually fleshy connective tissue that has become swollen. Tender points are not swollen, although they are painful when you apply pressure. This is what a doc does when they test for FM, they will apply pressure to the common "tender points" and see if they are sore on you.
And Bluelakelady is right about your doc. FM is very complex, and it DOES confuse many many docs, and there are a lot of us here that have been to more doctors than we care to count just to find out more and better treatment for this condition. My best tool has been the .Net and my newsletter. I check out any new clincal trials going on for FM, anything I can read aobut it, I do. I rule out what I believe to be "hooey" and concentrate on the "possibles". I stay away from anything that says "cure"! LOL
I'm confused, you mentioned your "first period", you are a teenager then? May I ask, are you having pain of any sort right now? Where? Have your docs mentioned possibly an MRI of the brain to rule out MS? What about a blood test for Epstien Barr? This is a "mono-like" virus, but can be the root of a lot of physical evil. As for Lupus, my doc is having me tested for auto immune disorders thinking even tho my ANA tests are always negative, that I may have an early onset of Lupus (not Systemic, the bad kind) that just isn't showing up on blood tests. I have heard so many stories about folks who have had Lupus and it didn't show up in there blood test for years.
The body is a tricky thing, but if you aren't feeling well, then something is going on. You know your body best. Keep at your docs. See if you can get an MRI (can't remember if you said you had one yet or not) also maybe some more intense blood tests.
Oh and what everyone has said here about exercise is so very true. If you indeed have FM exercise is very good for you. Not running the 50 miles! But moderate exercise, starting slow and building up. I have read so many posts here where people swear by it, and when they stop exercising, they feel worse. It takes time, and it does hurt, but it will feel better slowly and gradually. But did you say that when you exercise you feel sick afterwards? If so, this is a symptom of Chronic Fatigue Syndrome. It's called "malaise". Where you do some sort of exercise or strenuous activity (vacuum, garden, clean your house, whatever constitutes being "physical") and then for two or more days following, you feel "sickly". Also, even with FM, lets say you feel good one day, you go out and just go to town, doing all the stuff that's just been waiting for you....You WILL suffer afterwards! LOL One good day of over doing it, will end up with 2 or 3 (sometimes more) of "paying for it"! LOL
Did you say that your doctor didn't diagnose you with FM because you didn't have depression/anxiety? Or was that another post I read? Anyhoo, if so, well THAT just yanks my chain. I believe, as do many others here, and thankfully more and more docs, that depression/anxiety is NOT a symptom of FM. ARGH! Getting away from the "it's because you are depressed honey" syndrome has been tough and still not totally demolished. We have fought so hard, and there is actual research out there that proves FM is NOT form of depression and your doctor is WRONG! You certainly can become depressed because of the pain FM causes you, but FM is not cause from depression! That has been one of the hardest struggles for us Fibromites for so long. Trying to prove that we are normal folks with a connective tissue disorder, we are not depressed! Yes, depression causes pain, but so does a connective tissue disorder, and chronic pain will cause anxiety and depression, for the simple fact that your whole life is changed! Can you see that this is a sore subject for me. That is one of the first meds a doc will push at you, ANTI-DEPRESSANTS! And usually without explaining why they are giving them to you. Supposedly for a serotonin re-uptake. Us Fibromites don't have the serotonin like "normals". Which is a cause to our pain reaction and our sleep disorder, HOWEVER we aren't depressed, and I for one refuse to take the anti-D's for that reason alone. There are natural amino acid supplements out there you can take besides all these mind alterning anti-D's. Now, I DO believe in taking them if you are depressed, and matter of fact I'm speaking to my therapist this week about just that, but only because of my life situation, not my FM. Read the very first post on the FM board. It's a "sticky" post and it's by me. It lists all the "other" things you can take for your body besides scripts, and I have a little testomonial in there from a good doc about serotonin re-uptake and the myths that surround it.
So, honey, I know you've gotten some good answers here, and mine most likely confused you to tears, but if you feel so strongly that you have something else and not FM, by all means, pursue it. Keep at your doc, change docs, research the .Net, get books, do what ever you have to do. I say this because there have been many many folks diagnosed with FM who INFACT had something other. Like I said, you know your body best. But FM is a very very complex and at least controversial condition in the medical community. And all that controversy only ends up hurting us, the patient.
Good luck honey. Keep us posted.
Last edited by tkgoodspirit; 04-23-2005 at 09:49 PM.
Hello! Thank you for all the responses. To answer some of your questions TK, I am 28. The "first period" I was talking about was my first one after my miscarriage (it was my third in a row but my fifth altogether).
I was not diagnosed with FM because my doctor said I do not have enough "diagnosing criteria" ; namely the tender points (I don't have any of them). He said however that I have some type of hypersensitivity pain disorder; which I strongly feel I do not (but since reading these boards I believe my mom has FM and I encouraged her to talk with her doc about it).
He also told me the treatment for FM is low dose anti-depressants and why they're effective. However I am unable to take them due to trying to conceive in the near future.
I have had two MRIs done (the first showed that I have heterotopic gray matter in one of the ventricles in my brain; the second was after three months to verify the diagnosis). Everything was normal otherwise. I requested a spinal MRI but my neuro isn't keen on the idea.
I had mono 13 years ago. I was tested last July and the test showed the past activation but no recent exacerbations.
I do not tolerate being in the sun very well (vision gets blurry and I get light-headed from the heat. Same thing happens if I take a hot bath or exercise). My joints ache terribly and I get exhausted. This was why my doctor tested for lupus and MS.
My doctor put me on thyroid hormone this week due to low normal levels of FT4 so I'm hoping it will help (I have a strong family history of hypothyroidism). He also gave me a referral to U of M hospital in Ann Arbor Michigan. I'd prefer to just go to Mayo but the money tree is looking a little wilty .
It's just so difficult having the "label" of hypersensitivity pain disorder because all the investigating stopped. Suddenly, I was on my own without answers or direction (not to mention without treatment). I was misdiagnosed and now I'm paying for it (literally and metaphorically ).
I appreciate all the support here whether I have a pain disorder or not .
Thank you again for all your help!
Love and Prayers, Kelly
P.S. I've tried to exercise consistantly and "push through" but I simply have not found the point at which it helps rather than harms. I swell up, get stiff and cannot continue.
stop trying to "push thru". it will kick your fanny. little exercises of a few minutes. like 5 or 10 at a time. baby steps. here is what i do. i stretch for 5 minutes after i wake. then about every hour or so i do some gentle stretches. i used to dance so most of my stretches look like a clumsy ballerina after a hard night on the town. i take short walks several times a day. those last 10 to 30 minutes depending on if i find a neighbor to gab with or ducks to play with. find your halfway point. then you will know when to stop. halfway before you are done start home or ease off on exercising and cool down gently. always remember to breath. in pain we forget to breath.
it is frustrating to hit the stop sign. a doc says you have this or that and bam. it all stops. this is your body, not theirs. you keep at them. tell them you want tests done so you can have peace of mind. if that does not work ask them to refer you to a doctor who does listen. another favorite of mine is, would you treat your mom this way? or your sister? or your wife? the mom one works the best!
you are your only advocate, your own best friend. so you stick up for you and light a fire under those doctors. you are stronger, smarter, and more resiliant than you think.
ps has your period started yet? do you keep track on a calendar so you will know when you are due to start?
Hello! I'm supposed to start by May 14th. So I'll be seeing the OB then. I also have a referral to the High Risk Clinic (for obstetrics) at U of M hospital in Ann Arbor Michigan on August 5th. I'm hoping my local doctor can help me get things straightened out by then though (I'd really like to have a May or June baby next year so I'd have to conceive in August or September). We'll see how it goes.
I'm really hoping it's all just my thyroid and I can get to my optimum levels within a few months (just started treatment a few days ago).
Currently my most bothersome problem is the constant bleeding (I bleed for 21 days out of my cycle). I should stop soon (I stop bleeding during the two weeks before I start my period). I would think it will eventually cause anemia (my doctor periodically checks my iron levels). I bleed very heavily after exercise which is why I have to limit it at this point. I do practice tae kwon do with my son and enjoy the routines (called a poomse). It's simply directed movement. It does cause me to be stiff and weak but it's something I can do and it's a good mood lifter/stress reliever.
I have had Lupus and Fibromyalgia since I was 24 Im now 48 years old
I have had 4 babys since my DX and I can't honestly say for sure if its worse or not because of the fibromyalgia but I can reply to this.
(My question for anyone here is do you feel that you experience pain more acutely than before your symptoms began or moreso than other people? Has it been explained to anyone this way? Has anyone gone through labor with fibro or any other "pain disorder"? Do women with these conditions experience more painful labors? Do cuts, scrapes and bruises hurt worse with this condition?)
what your talking about is called hypersensitivity for some reason and they don't seem to know why or how this happens with Fibro but it happens a slight bump or sometimes even a cuddle can trigger it off it feels like you have a bruise and worse if you get touched or a poke a slight bump is worse lets say you bump your self on a coffee table or something but only soft. The pain is Bad a lot worse then it should feel it will seem to go away and all of a sudden its just as bad or worse its up and down in pain level bad not so bad to bad or worse to not so bad. Not every body with fibro has all or any real symptoms and yes your right every time you go to the dr well for it seems its allways oh maybe its your fibro or lupus. I also have Sjogren's but Ive only had that for almost 2 years.