Rheumatoid or Psoriatic Arthritis/Fibromyalgia

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JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/17/2010 9:54 AM (GMT -7)   
Hi All,

Normally I frequent the Rheumatoid Arthritis forum, but for a few months, despite minimal disease activity, I've been having severe pain and tenderness, with some spinal inflammation. MRI scans have confirmed there is "nothing wrong with me".

I am chronically tired, don't sleep well, have headaches all the time, constipated, etc etc, but I always put these down to side effects from the various meds I'm on... but given this unexplainable and SEVERE backpain I've been having, and the fact I'm tender just about everywhere.... I'm beginning to think it could be Fibromyalgia.

Anyone here also have RA/PsA/Lupus, etc?

What treatment options are in use at the moment, is gabapentin/pregabalin of any use to anyone? I'm currently waiting to see a doctor, but I'm not holding out much hope as surely they would have suggested it by now?

(England's Health Service leaves a lot to be desired. I'm guessing my Rheumatologist is one of the more arrogant types who will refuse to acknowledge the existence of FM, ME, CFS, simply because they haven't found an adequate mechanism. Another doctor i saw at one point suggested he'd put me on Gabapentin, but he wasn't my doctor at the time.)

Anyone found difficulty in having their condition recognised? On a more descriptive level, what does it "feel like" to "have FM"?

I realise I've asked quite a few questions here, thanks in advance for any replies!

James
21, Male, England.
Dx: Psoriatic Arthritis, Chronic Back Pain, Dyspraxia
Rx: 25mg Methotrexate Sub-Cut Injection & 50mg Etanercept (Enbrel) Sub-Cut Injection

Oh, and plenty of Tramadol, Codeine, Diclofenac, Diphenhydramide, Paracetamol, and SCOTCH.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17098
   Posted 8/17/2010 10:13 AM (GMT -7)   
Hi, James, and welcome!  The treatments for fibro are as varied as the people it affects.  There are a myriad of symptoms for this illness and we all don't have the same symptoms.  Also, what works for one doesn't necessarily work for another.  Yes, it's confusing.
 
We have members taking things like Lyrica, Savella, Cymbalta, narcotic meds, sleep aids, etc.  I personally don't take this.  I use ibuprofen with food and extra strength Tylenol, malic acid/magnesium supplements, and vitamin D3 supplements.  I also do gentle stretching exercises (in Fibro 101) and also daily gentle exercise like walking and swimming.  The more you move usually means the less pain.  If you sit or lay too long with fibro, you will be stiff as a board.
 
Be sure to check out Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot.  There is a link to symptoms that could help you.  Also, be sure to read the What Else Could It Be link because fibro shares many of the same symptoms as these other illnesses.  You need to have these ruled out first.
 
Yes, we have members with fibro and lupus and RA, etc.  There are a lot of "combination illnesses" so maybe that is what is going on with you.
 
It is important to make sure your doctor believes in fibro.  Unfortunately, as you said, there are some doctors that still don't believe this is an illness.  Hmmmm....wouldn't you love to have them walk in our shoes for a month or so?  I would ask if the doctor treats fibromyalgia patients.  I use a board certified Internist as my doctor but many here use a rheumatologist for their fibro.  BUT if they don't believe that fibro is a disease, you will be hitting your head against a brick wall.  I hope you do have a doctor that believes. 
 
There is a link in Fibro 101 called Doctors Respond to New York Times Article.  These learned doctors tell a disbelieving author what fibro is really like and what they think is going on.  They are studying this illness and we finally are being believed here in the US.  Not sure how things are in England.
 
I hope I have been able to help you a little.  I'm glad you popped over her and joined in.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon!
 
Sherrine
 
 
 
Forum Moderator/Fibromyalgia
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 8/17/2010 4:40 PM (GMT -7)   
Hi James :-) Welcome.

I believe some of our members do share at least one of two of your conditions. They may be along to say more as soon as they notice your topic.

You might be having more trouble with your doctor recognizing fibro also simply because you're male. Isn't that the pits? Sad but true, they look at men as if they can't have it --- but men can and DO get fibro. A male friend of mine was treated rudely by a rheumy who didn't seem to believe men could get it - but when he went through all the testing and showed the doc what he was experiencing, the doc could do nothing but agree, "you do have fibromyalgia." Now the doc is more helpful to my friend, thankfully. It shouldn't be that way - but unfortunately I think you have a bigger burden of proof when you are dealing with docs than even we women have.

I hope you will get down to the bottom of what is going on - and get your docs to treat you with the respect that everyone deserves.
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!

TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 8/17/2010 4:43 PM (GMT -7)   
PS: This might be helpful to some of your questions.

www.fmnetnews.com/basics-symptoms.php

www.fmnetnews.com/basics-faqs.php
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 8/17/2010 5:09 PM (GMT -7)   
Hi, James, welcome to the forum. Strange illness we have here, for sure. I would say I never feel really good. There is always some degree of pain somewhere, often multiple places and kinds simultaneously. And tiredness - always, the tiredness.

A good doctor really is half the battle.

Debbie
...fibromyalgia, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......I take Nortriptyline & Clonopin daily, and Darvocet as needed

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 8/17/2010 5:43 PM (GMT -7)   
Hi Jay, I have fibro along with mixed connective tissue disease. In my case it is an
overlap of lupus, scleroderma and RA. My rheumy put me on methotrexate to treat
it. I see you are also on it.

Initially the fibro seemed to be ignored by the doctors,they believed I had something
autoimmune going on. I was put on a predisone taper and my inflamation had gone
but my pain continued. Lots of bloodwork and a few rheumys later it was determined
I had MCTD. The anti-body RNP was testing high positve on consecutive tests and
I had lots of clinical symptoms, inflamation and swelling of joints, rashes, morphea also had a skin biopsy that determined scleroderma, tigtening of skin,
raynauds and a list that also fit fibro...fatigue, all over achiness, fog, insomnia ect...
A trigger point exam finally helped confirm a dx of fibro. It really took years before
everything was sorted out. I also have other issues that made a dx difficult

My description of fibro is ...feeling achy everday, sometimes experiancing pain that
feels bone-crushing, feeling very fatigued...like you didn't get a good night's sleep.
At times feeling so confused and forgetful, you wonder if you're losing your mind.

I have been taking Savella for over a year and it has helped some..I may need to
have my dosage increased . A muscle relaxer is used for flares. I take Flexeril
(cyclobenzaprine). Taking one day at a time and trying to stay positive helps.

Wishing you the best of luck. keep us posted!

hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 

Post Edited (crazykitty) : 8/17/2010 6:53:20 PM (GMT-6)


sotiredoffibro
Veteran Member


Date Joined May 2010
Total Posts : 1556
   Posted 8/18/2010 4:57 AM (GMT -7)   
Hi James and welcome to our fibro family, we have a great bunch of people here who are all willing to listen and try to help as much as we can. I have fibro along with osteoarthritis, osteoporosis and a variety of other things. As Sherrine said we are all so different in what helps each of us. I have supersensitivity to oral pain meds and have found that the only thing that helps for pain is the fentanyl patch due to the fact that I dont have to swallow it.lol
I also take valium in order to fall asleep at night and it usually works very well. I also take a multivitamin, magnesium and vitamin d these also seem to keep the pain tolerable. Good luck with the dr. you are seeing and dont ever be afraid to ask questions, vent or offer advice.
Gentle Hugs
Shirley
DX: Fibro, Gerds, COPD, Osteoarthritis, Osteoporosis, High Blood Pressure, and Depression.
When I get where Im going dont cry for me down here. (Brad Paisley & Dolly Parton)

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/18/2010 7:34 AM (GMT -7)   
Thanks for all the responses guys, spoke to a doctor (I transferred back to my childhood doctor, as he treats the rest of my family. I have to travel, but it is a better practice!) who told me preliminarily that he will look into referring me to a pain specialist, he mentioned gabapentin, and is going to wean me off Tramadol and then hopefully I can take something more effective/stronger. No mention of Fibro yet, but given all anyone has said is "it doesn't match any disease I can think of", I'm going to bring it up when I actually see him, on monday.

Shirley - My rheumotologist suggested the fentanyl patch to me, but then changed his mind due to the paperwork involved in prescribing it in England. It seems anything stronger than tramadol (vicodin, oxycontin, fentanyl etc) cannot be prescribed by normal doctors in England. Can't get anything for insomnia either, my Rheum won't prescribe valium (or anything else for that matter)

TheChickenPrincess - Thanks, I just saw in one of the links above that it's a 9:1 ratio, which isn't exactly in my favour!

Sherrine, thanks for your reply - I have had 3 MRI scans, 3 X rays, many Ultrasounds, about 15 different blood tests, and they have found absolutely nothing. No joint damage, only mild inflammation which the MTX/Etanercept aren't keeping at bay. My Rheumotologist basically drew up a list of things he could it might me (drug interactions, spondylosis, slipped discs, fracture, nerve damage, organ damage, and more) and has systemically ruled out them all.....


Robin - our initial symptoms appear to be similar then, I am left with unexplainable pain, and i just can't fathom why my Rheum' hasn't suggested FM. I'm sensitive at about 13 of the 18 points on the diagram floating about (which he knows from RA/PsA assessment), and I have so many of the other symptoms.


I see depression runs with this disease, which is a cause for concern! I would say I have a certain level of anxiety and stress, but not depression. I have strong reservations about SSRI drugs, which is one reason i am so reluctant about taking Tramadol (which has strong SNRI action), it is disconcerting that it seems it may be neccessary if I am diagnosed with Fibro...

Thanks again to everybody, actually communicating with people is so much more usefulthan reading in-personal articles and journals!

James
21, Male, England.
Dx: Psoriatic Arthritis, Chronic Back Pain, Dyspraxia
Rx: 25mg Methotrexate Sub-Cut Injection & 50mg Etanercept (Enbrel) Sub-Cut Injection

Oh, and plenty of Tramadol, Codeine, Diclofenac, Diphenhydramide, Paracetamol, and SCOTCH.

SillyMe2
Regular Member


Date Joined May 2010
Total Posts : 110
   Posted 8/20/2010 8:46 PM (GMT -7)   
Hey James, sorry I just saw this post. It seems every time I go to the doc they find something new.. I decided.. I'm not going anymore!! lol.. kidding. I have Fibro and it started as Nerve pain and not muscle. This actually started 27 years ago.. but was told it was Stress and Anxiety..And if it wasn't that it's PMS.. ugggh.. I could go back and slap them all now. Look up all the treatments though. I have Psoriatic Arthritis and Fibro and Rosacea and Psoriasis (very mild).

I have actually found some benefit in taking Tart Cherry Juice and DL-phen. Welcome to the forum :).
DX: Fibro, PA (Psoriatic Arthritis), Psoriasis, Rosacea.
Formerly Savella, Now Lisinopril, Vit D, Prilosec, Ambien, LDN, Tart Cherry, DL-Phen

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/22/2010 11:17 AM (GMT -7)   
Thanks for your reply - what specifically do you take the LDN for? has it helped? Does it mean you can't use any opiate pain relief? (i.e. what constitutes a 'low dose' of naloxone?)

Thanks :)
21, Male, England.
Dx: Psoriatic Arthritis, Chronic Back Pain, Dyspraxia
Rx: 25mg Methotrexate Sub-Cut Injection & 50mg Etanercept (Enbrel) Sub-Cut Injection

Oh, and plenty of Tramadol, Codeine, Diclofenac, Dihydrocodeine, Paracetamol, Diphenhydramide, and scotch

Contact: facebook.com/ jabutler // burnley219 (a) googlemail.com (Anti-spam)

SillyMe2
Regular Member


Date Joined May 2010
Total Posts : 110
   Posted 8/22/2010 8:04 PM (GMT -7)   
Low dose is anything under 20mg I believe. Could be wrong.. LDN is used for the pain from Fibro. It actually did more for me than Savella did energy wise. There are a lot that can't even take Savella but I have to say it took over 90% of my pain away.. It left and aggravated the Arthritis part of that pain. LDN takes most of that Fibro pain but doesn't aggravate my Arthritis. It's said to help with it and so far.. it seems to be doing the trick. But not totally.

Opiates/Narcotics you have to be free of before starting this medication but once you are on it if you do need a vicodin you can indeed take it as long as it's 4 hours after your LDN dose and I think something like 8 hours before. Truthfully I haven't had to use anything other then a Tylenol or Ibuprofen. It's working great. I can think a bit better too! Only been on it a week so.. I can only give you a weeks worth of info! tongue
DX: Fibro, PA (Psoriatic Arthritis), Psoriasis, Rosacea.
Formerly Savella, Now Lisinopril, Vit D, Prilosec, Ambien, LDN, Tart Cherry, DL-Phen
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