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Posted 8/16/2010 1:36 PM (GMT 0)
No doctor has ever mentioned this to me, and until a few minutes ago, I'd never really read into it. My mother had a diagnosis of FM for a while, but that evaporated and the doctors "changed their minds" (her words)

In spite of only minimal disease activity with my PsA, I am still experiencing chronic fatigue and severe pain. I put the joint pain down to PsA, the back pain was "unexplained", and I explained the fatigue/cognitive dysfunction with MTX.

I have more than halved my MTX dose with no change, and the points of main closely resemble those of fibromyalgia. MRI shows no damage to spine, and only minimal inflammation. Now to find a doctor who believes in FM's existence.

Ask any anesthetist how a general anesthetic works, and they will tell you it is unknown. Yet no-one claims general anaesthesia doesn't exist......
Posted 8/16/2010 1:36 PM (GMT 0)
I forgot to add:

Can anyone on here with FM (and ideally, RA/PsA/Poly Arthritis or similar) try and describe their symptoms/pain briefly, interesting to see the kind of semantics used in descriptions.

Thanks
Posted 8/16/2010 5:24 PM (GMT 0)
I just know that there are supposed to be like 18 trigger points or something that when pressed on give you pain to get a dx of fibro. My doctor was trying that on me last time I was there to point a finger at what's causing my pain because my blood numbers are good and therefore he doesn't think I should have this daily pain I have. lately I think this fibro is becoming a "catch all" dx. BS- my pain is in my hands, my ankles, my feet, my knees, my shoulders.....RA places DOC! Sorry my blood numbers are good- perhaps the MTX is giving false impressions in my blood about what the RA is doing to my body. I don't know!
Posted 8/16/2010 9:55 PM (GMT 0)
yeah I very much agree that fibro isn't very much of a dx, but ascribing a name to something usually facilitates patient improvement, and at least it can allow a focus on treatment rather than hunting for biological causes, since there is obviously a great deal of people with these otherwise unexplainable symptoms.

My bloods are fine, MRIS/Xrays/ultrasounds show I have minimal inflammation, whereas 12 months ago I had lots, so as far as Rheumy is concerned, MTX/Enbrel has worked. But the fact is, I am still in pain, I'd go as far to say, more consistently than I was a year ago. If someone tells me I'm just going to have to live with it, I might snap!
Posted 8/17/2010 4:24 AM (GMT 0)
Hi JayBespoke,

There is a Fibro forum on HW maybe you could put a post on there with your questions, they are lovely people only too willing to help.

Sorry you are suffering so much there.

Take care

Jo

Posted 8/17/2010 3:05 PM (GMT 0)
Thanks Jo :) it is my next port of call, I was aiming for people who perhaps had RA/PsA first, and then developed FM. For some reason, none of the doctors I have seen have even suggested the possibility, even though I've read 30% of RA patients develop FM, and I have a large amount of the symptoms (more than required for diagnosis).

I didn't actually realise there were so many other boards, though I can't help but notice psoriatic arthritisites are left out ;)

Thanks & take care,
Posted 8/18/2010 1:47 AM (GMT 0)
Hey Jay,

Well I have what they believe to be RA, but originally dx with just fibromyalgia. My mom was dx along with both sisters with it many years ago. I don't say i don't have it but def. have had to push to get them to look at the RA as well.

Originally when I went to Rhuemy I had extreme exhaustion, headaches, pain in my muscles and along my spine.Pain in chest, ribs, and hands. i had 15 out of 18 trigger points. Where they press on your kneck, back, hips and ankles wait for you to say ow or make a face then I guess that constitutes a trigger point. Nothing was in my blood work but elevated crp levels..which inflamation is not suppossed to be present with Fibro. Since then I have had an increase in pain and stiffness in hands, elbows, knees, shoulder joints, ankles and toes. It is constant where with fibro if I overdid the next day or so I would be in constant sharp pains. I dont know if this helps, but sorry that you had to have another thing added to your list at such a young age. Take care. Heather

Posted 8/18/2010 2:46 PM (GMT 0)
Thanks Heather, my symptoms are basically the same as that, even down to the blood work/CRP. PsA was an easy diagnosis for my doctors given family history, but now everything I am experiencing is being put down to it, or to the drugs used to treat it (by me more than the doctors, it has only reently gotten to the point where I was sick of ignoring it and thought there had to be something wrong.)

P.S. is "Nuvigl" in your status referring to 'Armodafinil (Nuvigil)'? (I make it a rule to look up any drug I haven't heard of, especially if potentially related to my condition!) - I notice it is an enantiomer of modafinil (Provigil), which is very interesting. I self-medicated with Modafinil for a while, and found it extremely effective at increasing wakefulness/concentration... at the cost of nausea and a red rash on my back.

Was it prescribed soley for your narcolepsy, or to treat it in conjunction with your fibromyalgia?

take care, j
Posted 8/18/2010 3:50 PM (GMT 0)
Because of my Fibromyalgia, my narcolepsy was intensified. Even before I was dx with Narc. they gave me Nuvigil. It works very well. My Dr. said they didn't want to do long term on it..that has been over a year. As long as I don't take it every day, he feels I am not abusing it so he keeps prescribing. I usually take a day off on days that I don't work. It has helped with my sleep too because I am more aware and alert I get more done so then I am more tired at night. All one big happy circle of fun. Hope that helps. Fibro. does usually go with RA and PSA because of the amount of pain and how often that part of your brain has to interpret it. I'm not surp. you have it. Heather
Posted 8/18/2010 8:57 PM (GMT 0)
I must be having a slow day, it took me about 10 minutes to realize "surp." was an abbreviation of surprised. I was thinking "sure?" "surped?" "surf?"

Thanks, I should probably wait and see what the doctor says and try and relax! take care
Posted 8/19/2010 1:14 AM (GMT 0)
Jay,

Sorry, for the abreviations...for whatever reason lately my nerve pains or whatever in my arms have also been making my hands go to sleep. It's just easier with my long post. haha that was funny though..didn't mean to throw you off. Yes, don't worry Fibro doesn't cause joint damage or any of that..just a lot of pain. See what your dr. says...and I hope it is Fibro if it has to be something. I'd hate for it to be something worse. take care. Heather

Posted 8/19/2010 2:57 AM (GMT 0)
Hi Jay, because of your age I'd be asking your rheumy to up your meds or change them. Sometimes switching biologicals can give you good relief.
you know I still have pain despite my bloods looking good, my wrists are slightly swollen as are my feet, my fingers and odd knuckles, my knees still hurt when I climb stairs, I get sharp jabs and I have a continuous ache to a lot of joints. I get tired easily too. But my rheumy still feels by tweaking my meds she will get me back to feeling good again. She doesn't go on my bloods alone but what I'm saying to her. I have had combinations that have really worked for me in the past. Usually the side effects have forced me to change.
Can you change rheumy's? See if a course of prednisone does anything for you, if it removes the pain and tiredness you know its inflammation then. May be worth the experiment.
It just doesn't sound as if your rheumy has your symptoms under control for you to live a full life. I'd be complaining, best wishes, golitho
Posted 8/19/2010 8:12 AM (GMT 0)
Golitho, thanks for your concern. My rheumotology clinic is probably the best in the country, and I am already on biologics (Enbrel) alongside MTX. Both worked very well, I also tried sulfasalizine but could not tolerate it.

The side effect profile I'm experiencing now is very much different, my inflammation is down by as much as 75%.

I do have Corticosteroid steroid shots occasionally, but only when stiffness is really bad, as I find them slightly less effective each time - I'd like to "save" some effectiveness for when I'm older!

I'm seeing my family doctor on monday, and my rheumy on wednesday, so I'll see what they both say!
Posted 8/20/2010 2:52 AM (GMT 0)
Its just so frustrating though for you, have you had your joints xrayed or MRIs of them lately, it could be bone fragments in the panus causing you pain?
I just did a course on RA management, a sort of empowerment course, but one of the young people on it had really good blood work but extremily sore wrists, when they did an MRI on them , they were filled with bone fragments. She is now having surgery to clean them up. My right knee despite all the meds never seems to settle and they now think I've torn the synovium so sometimes, our joints damage in other ways. Plus I now have calcium build up on my supraspinatus tendon in my shoulder. Causing a white hot pain, (just to add to my Fun) anyway it may be worth some more investigation especially if you're in such pain. My rheumy told me the next time I flare she will MRI some of my joints. This gives her a very clear picture what is actually causing the pain.
I'd be asking your doctors for some answers.
The shots only ever give limited relief, so frustrating, the only time they really helped for any length of time was when I had bursitis in my hips!
Prednisone orally or by a pulse is more what I was thinking of, but if your joints aren't swollen, I'd be asking questions.
Such a horrible disease and the meds play havoc on our bodies too, best wishes for next week, hope the appts go well for you, golitho
Posted 8/20/2010 1:53 PM (GMT 0)
Hey, thanks for the advice.

I had an Xray 3 weeks ago on my hands and feet, and an MRI on my spine. Next week I'm having an MRI on my hands/wrists, but I had an ultrasound 3 weeks ago which showed a vast improvement on 12 months ago - and nothing to worry about.

take care
Posted 8/20/2010 11:35 PM (GMT 0)
golitho- another person with good bloodwork, limited swelling but daily pain- what is it with us? I never had MRI or Ultrasound but xrays came back saying no erosions.
Posted 8/21/2010 12:01 AM (GMT 0)
I only had them because it's funded by ARC as a clinical trial. It's a shame ultrasound isn't more prevalent - the results are instant and very reliable! (And the machine is pretty cheap to maintain, and easy to use)
Posted 9/7/2010 5:54 AM (GMT 0)
Jay,
I understand what it's like to be young and in pain. I've had it RA for about 49 of my 56 years and was formally
diagnosed at 25. about 10 years ago I was diagnosed with the fibro. I've done the whole gambit of drugs for both
and finally found relief with herbals. I only use Darvacet and Skelaxin when it gets severe. 2 years ago I was to
the point I was up most night on the couch having muscle spasms so bad I was literally curled up in a ball, the
spasm would pass and I would be able to straighten up, only to have it hit again a couple of minutes later. It got
to the point where 4 Darvacets and 4 Flexoril wouldn't even touch it and I would get up at 3:30 in the morning to
go to work. I would be drugged out and incoherant. Sometimes I wonder how I was even able to drive the 20 miles
to work (in my 5 speed) without killing myself. With the herbs I don't need much dr meds as a rule. Right now I'm
trying to get the strength back in my right knee after arthoscopy on it 5 weeks ago. It's taking it's time healing as
I'm not getting any younger and the older I get it's harder to bounce back from surgery like this.

They find many people who have arthritis develop fibro and vice versa. They seem to go hand in hand. I think the
pain differs from person to person. For myself when a weather front is coming in I usually feel it in my shoulders,
a cold front in the hips. Most of us become living barameters. If you don't want to do predisone try Yucca Root as
it's a natural steroid.

Nana Monster
Posted 9/8/2010 7:33 AM (GMT 0)
Thanks for the advice, what other herbal preparations do you use? I know absolutely nothing about herbal supplements or medications, I wouldn't know where to start. Willing to try anything ATM though.

I was finally dx'd with fibro 2 weeks ago and given Amitriptyline (only 25mg), and I have to say, it is working wonders for Insomnia, has eased pain a little, and is extremely tolerable, a pleasant surprise! I asked for Lyrica but the doc wouldn't indulge... for fiscal reasons I believe :)

t.c.
Posted 9/8/2010 8:21 PM (GMT 0)
Good luck with the amitriptolyne. I used it for a while and did feel a bit better but the dry mouth was too severe and
then I found my hair was falling out from it. I was growing my hair to donate to Locks of Love so I stopped taking it.
Lyrica has way too many side effects including cancer so that is really not for me. If you want an herbal equivalent try
True Calm by NOW brand, as it's like an herbal flexoril. I use herbs for everything possible and only revert to prescription
meds if I have to. If you want advice my e-mail thingie is in my profile. Feel free to contact me.

Nana Monster
Posted 9/8/2010 9:24 PM (GMT 0)
Thanks Nana. Unfortunately it seems like benefits from Amitriptyline are short-lived, so I'll have to see what else is available. I looked up the website for the True Calm, certainly looks like it is worth a try, especially at 10p per capsule!

A side effect of Lyrica is cancer? Is this like an established link or a few concomitant cases? There's a casual link between Enbrel and skin cancer which is a cause for concern! The last thing I need right now is cancer... if that was my aim I'd start smoking tobacco!

Thanks
Posted 9/8/2010 9:37 PM (GMT 0)
Jay,
Take a look at Arthritis Today and see the REAL side effects of many of these drugs. Blood damage, brain damage,
heart damage or failure, kidney and liver damage or failure, various cancers and the new Humira can actually cause
TB. There is NO way I'm going back to that. I even tried samples of Vioxx when it was out then they said about so
many dying of heart attacks from it. Scares the crap out of me. skull
Nana Monster
Posted 9/8/2010 11:43 PM (GMT 0)
Is the Arthritis Today mag you refer to the one from ARC?
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