Posted , 5 users are following.
Has anyone here with fibromyalgia got another chronic illness? I mean like arthritis in the spine or me?
I've had fibromyalgia symptoms but I have Ms and cervical spondylosis, narrowing of the spinal canal and facet joint disease, the neurologist thinks my symptoms are of the latter stuff not Ms.
Thanks 🌻
0 likes, 16 replies
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linda51222 bic24773
Posted
yes I have had fibro for many years I was also diagnosed with Sjogren's Syndrome and Pallindromic Rhuematism, and they are now loking at RA, It would seem once you have one autoimmune condition you tend to present with symptoms of many others.
L.
bic24773 linda51222
Posted
Thanks Linda, I checked out sjorens and had a wow moment, I have dry eyes (use viscotears) almost permanent glands swelling and I choke, I can't tolerate heat and get blistery rash. I had to go to opthalmic because I had an eye problem, he gave me a letter for the Dr because he said it was a cyst and indicative of arthritis. My Dr isn't much good though I'm afraid. Thanks again. Wishing you well 💮🌻
linda51222
Posted
Hi Bic,
I run a suport group for people with Auto immune condtions and many of our members have more than one of them, many autoimmune conditions are very difficult to diagnose as if the bloods are not taken at the right time they get missed, and as someone on here as already said when the GP can come up with nothing in the bloods they opt for Fibro as there isn't a blood test for that. Sjogren's can affect your eyes mouth joints and your gut as well as other parts of your body but quite often the ANA test comes back normal even though you have lots of symptoms they call that primary Sjogren's
L x
bic24773 linda51222
Posted
Ah interesting again Linda because I have reflux and sometimes severe abdominal pain. I just feel like a hypochondriac and was treated like I've before my Ms diagnosis and then again recently. It's so frustrating. I can't do anything too long, sitting, standing or walking but as I said neurologist said it's my spine. It's so good to hear others stories though I feel for everyone in this position. Thank you 🌻
erykah71 bic24773
Posted
I have hypermobile ehlers-danlos syndrome. One rheumatologist says I don't have fibro, but widespread chronic pain, another has said I do have fibro and that it usually goes hand in hand with other chronic illnesses.
I thought I had MS as my nan had it and I was getting symptoms I remember her having. The neurologist said it too was fibro along with the hEDS and WCP.
It seems that the medical profession don't like to diagnose fibro unless they are sure, and it's so hard to dx these invisble illnesses that others just chuck the fibromyalgia word around to cover what they can't explain.
Whatever is causing your sympoms, I hope you get some relief soon
bic24773 erykah71
Posted
Thank you, yes mum had ms, my sister had a neurological disease on top of a terminal illness and my eldest sister has same MRI results as mum and mum's neurologist told me she's probably got it too. Tge neurologist confirmed my ms diagnosis just said it's not active just now and it's these other things. I've not been given fibromyalgia diagnosis but I get horrendous tender spots and flare ups, Inhooe nuw they've discovered this blood vessel thing that a test will follow. Hope you get some relief too. 💐
erykah71 bic24773
Posted
Thank you hun.
I am so sorry that you and your family have been through such an awful time.
Can I ask, are you double jointed? Like I say, I have hypermobile ehlers-danlos syndrome which means my collagen is very stretchy and causes my joints to move beyond what's considered normal.
It is a heritable condition and does often get misdiagnosed as fibro. There are many types of EDS one type which causes difficulties with blood vessels - Vascular EDS (vEDS)
I don't want to scare you and am probably way off, but doctors never look for EDS, and vEDS is quite uncommon, but sadly very dangerous. If you search ehlers-danlos syndrome you can have a read.
Like I say, I'm probably way off, but with your family history and blood vessel thing it will be worth having a look to rule out - a neurologist wouldn't look for this. When I mentioned my EDS to the neuro I saw, he said I was one of those weird bendy people that stump drs lol.
Have a look and let me know x
bic24773 erykah71
Posted
Hi again, I've looked into EDS because my daughter has Ms symptoms and both her and my son are double jointed but we're all on the autistic spectrum too and I think that sometimes goes hand in hand with EDS. Its more recognised in USA I think? Thank you for you empathy too, I appreciate it. Oh and my daughter also has skin, teeth and period trouble which I think I read was EDS but I'll recheck as it's a few years ago I looked. Enjoy what's left of the weekend and thanks again 💮
erykah71 bic24773
Posted
You're more than welcome hun. I hope everything gets sorted soon. Feel free to pm me if you want to, I know how frustrating chronic pain and all the joys that go with it can be.
Sgr9111 bic24773
Posted
Hi, I was diagnosed with fibro in my 30's after multiple complaints and symptoms. I had whiplash in 1997 and it all went downhill and struggled since then. Headaches, dizziness, body pain. Low back and neck pain. Low blood pressure upon standing, fatigue, weakness. Dry eyes, tinnitus, tmj. Multiple stomach issues, IBS, constipation, I saw neurologists, rheumatologists, physiatrists, multiple chiros and primary drs, gastroenterologists, endocrinologist , enterologists. Was tested for ms, sjogrens, lupus, Lyme's, arthritis and more. Had multiple MRIs Xrays and cat scans through the years of hips, back, neck, brain, hands, kneees, stomach . Multiple, eegs, tilt table test, sleep test, emg, lung function test, colonoscopies, and scope down the throat (forgot what its called) swallowing tests, allergy , gluten, celiac tests and more. Multiple bloodwork tests through the years always showed some inflammation but not enough to point to anything and MRIs showed DDD, stenoisis and herniations, spinal cord compression in 2006. Was always told to do PT and chiro treatments. Now I'm 53 and in 2015 I was diagnosed progressive myelopathy with severe cord compression and congenital stenosis. Symptoms worsened after my 1st cervical fusion and 1year later needed another surgery from the back of the neck, very extensive surgery with rods and screws and now I'm post op 8 months, doing a little better but still struggling and symptoms are now permanent. Hand & leg weakness, gait and dexterity problems, bladder retention & numbness. My results would have been better if they took care of the problem back in 2006. Unfortunately my persistence didn't pay off, but someone dropped the ball. Chiro treatments are not good for cord compression but they all made money off of me instead of doing the right thing. I hope you have better luck than me.
bic24773 Sgr9111
Posted
Omg you've been through the mill, my sister's had everything you have. Have you been given catheters for catheterization? ? She's found relief with it. Both her and me have had the whiplash injuries. You're still young enough to demand some help. Good luck thank you for sharing your story 💛
linda51222 bic24773
Posted
well well funny you should say that I had a whiplash injury some years ago also. I also have bladder problems as lots if Sjogren's patients do I do not get messages to my bladder that I need to pee and have been self catherising for 25 years 5 times daily, so it would seem the connections are there pity we do not get listened to they could learn much from all of us.many of the tests I have had come back border line and they don't treat border line, I have been tested for Adissons disease thyroid and all the other autoimmune conditions you can thinkof all borderline.
L x
bic24773 linda51222
Posted
No such thing as coincidence Linda, I've had borderline thyroid too but I did read recently that cervical spine conditions can affect it.. I have bladder issues too it's so depressing, I can't hold mine and have to go even if I don't think I need. My legs swell up too if I don't raise them my sister's bloating has improved since she got her catheters. They dismiss everything don't they? However my sister seems to have found a good Dr. 🌹
linda51222 bic24773
Posted
Glad to hear your sister has found someone, my badder is the opposite I can't get it out without the catheter sometimes when I pass it there is as much as 800ML
L x
bic24773 linda51222
Posted
Well she lived in SA for most of her life so she had to pay, I hate going to the Dr's, it's a kind of phobia. Maybe you should catheterise more frequently? It must be difficult, I hope you have a radar key. 💮