New medical thoughts on Fibro:

Debbie D · 01-31-2014, 08:45 PM

Question: does fibro cause spasticity-severe enough to cause a 12 degree bend in the knee joint?
I was dxd with fibro in the mid 80s and have had few flares in the past decade. I was dxd with MS in late 08 after a few years of increasing sxs.

I had knee replacement surgery 8 weeks ago…the narcotics worked on the pain from spasms and the surgical site, but then I had a severe flare of fibro that continues to this day; I also had a flareup of MS sxs.
The narcotics did nothing for the fibro pain. I discontinued the narcotics several weeks ago, and my joints and muscles are feeling that old familiar ripping feeling of fibro.

Just wondering if the spasms are from MS or from fibro...

Mrs.Redman · 09-05-2014, 02:11 PM

I realize I am on an old thread but wanted to see if there was any mention of the relationship between FMS and Small Fiber Neuropathy. I have SFN and was dx'ed about a year ago. I now have pain all over and won't go into that. I'm posting here(though I could not find the "New Thread" anywhere and I am a member)because I have recently read that there have been some small studies done on people with FMS and SFN showing that a quite a few also have SFN! Since my dx of SFN, my pain has increased, intensified and spread. I am now wondering if the SFN caused the fibro? Can anyone help me? I have been looking all over this site for more information about SFN, how to treat it, IF my symptoms are fibro and not SFN or a combination of the two. I am really searching for answers and cannot find any because SFN is pretty rare and most drs know very little about it.

glenntaj · 09-06-2014, 05:46 AM

--small fiber neuropathy is hardly rare; it is the most common type of neuropathy from diabetes and a large majority of "idiopathic" neuropathy sufferers have predominantly small-fiber involvement.

There well may be a link between small fiber neuropathy and fibromyalgia--but a lot of that would depend on what one's criteria for fibromyalgia are (a subject that is still in considerable dispute among doctors and researchers).

Small fiber neuropathy, by definition, involves the small, unmyelinated nerves that subsume the sensory sensations of pain and temperature, and also most autonomic functions. There is no muscle involvement with small fiber neuropathy, as it is the larger, myelinated nerves that ennervate muscle. However, some think that muscle knots or trigger points can tighten and compress small fiber nerves that pass nearby them, leading to neural symptoms.

The muscle involvement reported with fibromyalgia (myo means "muscle") makes it unlikely that small fiber dysfunction is the primary or only mechanism involved in the condition. It is likely multifactorial and would certainly involve larger, myelinated nerves as well.

jillianjoy · 04-22-2015, 09:21 AM

I am glad to hear there is a Dr. at U of M who has the latest information on Fibromyalgia. I was diagnosed in 2011 by a Rheumatologist after several years of going to a GP. I have tried almost every drug on the planet, and have either had an allergic reaction or it didn't work. I'm currently seeing a pain management doctor who prescribed Ketamine Infusions, PSTIM and Suboxone. I am so confused. I live close to U of M, so will try to get an appointment with Dr. Clauw. Thanks for the info!

Katkeyper · 10-29-2019, 09:14 PM

Quote:

Originally Posted by islandartist

I have had fibromyalgia for 18 yrs and essential tremor for 30 yrs. After many Dr.s, ad nauseum, I finally resorted to fentanyl patches for pain. Many feel that opioids are not effective, but for me it has been the only relief, with no side affects. I have used them for over 10 years and would like to discontinue this pain reliever in order to assess my current pain level. Unfortunately the patches are extremely addictive, a fact that has been of no concern to my many drs. My tremors are getting more disabling, but according to my dr.s, this is not a result of the fentanyl. I have my doubts. And the depression! Every day is challenge. Any thoughts/info about Fibromyalgia and essential tremor would be greatly appreciated.

Hello! I'm sorry you are having tremors. I have had FM for likely 20+ years, been on every med, allergic to most of them or ineffective, and also attended pain management for a month in early 2000s (was worth it at the time, but I'm far worse now with other issues). I have internal tremors as part of my small fiber neuropathy with TS-HDS antibody - a condition that validates FM. I also have Paroxysmal Hemidystonia - a movement disorder. Have you seen a movement disorder neurologist? They deal with tremor issues such as Parkinson's and dystonia, etc. Might be worth a shot. It took me about 10 neurologist and neurosurgeons to get to this doctor and only after I researched many medical journals and shared ideas with my doc. Be your own advocate! Good luck.

Katkeyper · 10-29-2019, 09:39 PM

Quote:

Originally Posted by dawnptl

I've been diagnosed with Fibro, CF, IBS, Hormone Imbalance, and suspected of having Lyme disease. Have read the most about Lyme, and now I am starting to find out more about Fibro. Thanks for the information from the conference! I was especially interested to hear that chiropractic and massage help very little.

I have needed chiropractic adjustments for 7 years, almost every day at first, now a couple times a week. I suspect the Lyme bacteria has damaged my ligaments, and has compromised my ability to hold my adjustments. Has anyone else ever had this problem? I have tried so much, and am tired of being in this frustrating cycle. The pain and muscle tightness gets debilitating if I don't go back in for relief. ANY HELP OUT THERE?

Hello! I have had FM for 20+ years and was diagnosed this year with Small Fiber Neuropathy (SFN) with TS-HDS antibody (and many more issues). I was tested three times between Neurology and Rheumatoid Arthritis doctor for Lyme disease and it was negative. However, I did test positive for Rocky Mountain Spotted Fever (took 10 days of Doxycycline and supposedly it's gone...) and Alpha Galactose (red meat allergy) - both from tick bites, and likely from years ago when I did more camping. The SFN was validated by a biopsy from my lower and upper leg. It also gave extra validation to my FM. Is it possible you can discuss these other tests with your Neuro?

Also, I changed chiropractors on advice of my orthopedic specialist to a chiropractor who tests and reactivates the muscles that don't want to work properly - for me these are my glutes and lats. I also attend physical therapy there. I learn simple exercises to help me keep up or reactivate muscles and just recently added strengthening. This could mean doing only 5-10 reps because exercise exacerbates other conditions I have. I love a massage even if it's just all about an hour of relaxation. I call it my reset switch! Be your own advocate! Best of luck!

Katkeyper · 10-29-2019, 10:07 PM

Quote:

Originally Posted by 10_after

I just joined this site and I am so thankful I did. Even just reading everyone's posts made me feel I'm not alone. I really get the "i'm 40 but feel like 90". I don't want to feel this way anymore. I have chronic headaches... tension I guess the most but leads to migraines. I'm suppose to see a neurologist in July at Vanderbilt and I guess go from there. I would love input from you all as to which direction to go. I just came off Paxil because I just took it while in Nursing School and all the stress with it. But all the pain is still there, from head to my toes. My shoulder blades and neck are unbearable at times. I can take a lot of pain but its to the point where I'm grouchy and I don't do things like I use to do. I've been taking Valium and Fioricet® (Butalbital, Acetaminophen, and Caffeine) and that can give me some relief for a very short while. I've taken Amitriptyline but those class of drugs make my ears ring very loud, so we stopped those in hopes of something else. I started Lyrica last night, 75mg and woke up this morning very dizzy. And I read on here about people taking 600mg a day. How does one function? Right now I'm tired, hurting and can't even think what to do next. Being in nursing.. I sure can't go around dizzy. The valium etc does not make me sleepy at all so I have no problems taking it and functioning. But I just live with the pain until I break and cannot bear it anymore. sigh... like I said... i'm just overwhelmed, hurting all over, and I don't know what to do as the drugs that are for Fibro seem to give me side effects I can't live with either. Any thoughts are appreciated so much!

I'm so sorry for your pain. I've had crazy headaches since I was 8 years old that have progressed to Hemicrania Continua. I'm not a doctor, but not sure what your headache symptoms are. Migraines, continuous headaches or changing headache patterns? I don't have much luck with medications. My neurologists are trying to get creative with me because I've tried just about everything with no luck, bad side effects or I'm allergic. However, some meds take time to adjust to and require ramp-up.

I've been the medicine guinea pig for years. I feel your pain! It's hard to find the perfect "cocktail" for relief. One medicine I've tried with some success for general pain is Low Dose Naltrexone from a local compounding pharmacy. In larger doses, the med is used to treat drug addiction. However, Neurologists and Rheumatologists are using this medication at low doses for FM/neuropathy/arthritic pain. I was ramped up every 30 days from 1mg to 2mg to 3 mg to 4.5 mg.

For onset of my headaches, I use Ketamin nose spray (also from a compound pharmacy), Clonazepam orally disintegrating tablet 0.25 mg and Carbamazepine (Tegretol), 100 mg tab chew. The ketamin burns, so I swab with a gel I was also prescribed prior to use. This is the first time I've been given this combination and it works about 50% of the time. The key is getting the meds in upon first symptoms. Mine just come on very quickly.

I wish you the best of luck.
Be your own advocate!

Northernlights300 · 03-28-2021, 03:53 AM

I found it interesting that he didn’t recommend opioids but also said that tramadol had a moderate success. Tramadol is an opioid.

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