Is it common to see MS and FM (Fibromyalgia) together?

Posted by vwolfe74 @vwolfe74, Jul 19, 2022

Morning,

I am experiencing severe, almost debilitating pain that began last week of June 2022. I have Hx of exact same symptoms and event that happened in mid-Mar 2020 and continued through Oct-Nov 2020. MRIs, CT scan, X-Rays, and blood tests completed in 2020 and nothing found.

My symptoms then included:

Extremely Severe Shoulder/neck pain-radiated out to clavicle and mid spine
Nauseau
Severe night leg cramps
Tremors
Muscle spasms
Map Dot Fingerprint Dystrophy
High Anxiety (environmental influence)
Restlessness due to pain
Chronic extreme Fatigue (experienced fatigue since childhood)
Bowel issues
Headaches

New symptoms that have appeared in this latest bout of whatever it is that can’t be diagnosed:

All symptoms above plus…

Map Dot Fingerprint Dystrophy-feel like I live in a cave…outdoor light and bright inside lights really bother my eyes

Muscle weakness on left side of body

Tripping, stumbling a lot

Memory issues (due to sleep issues)

Hard time staying asleep (due to pain)

Don’t want to be touched due to pain

Itching all over my body

Anxiety (due to environmental factors and stress of job related issues and people- typically I am a fairly laid back, easy going yet goal oriented, people pleasing personality)

Headaches-more intense this time

Bottom of feet hurting bad

Swelling of/around ankles without lengthy physical activity

HX of :

Chickenpox (4-5 years old)
Mononucleosis (16-17 years old-pretty intense case, out of school for 2 Wks and could barely function with fatigue from then-on to present day. People make comments to me about my sleeping all of the time. Multiple days of sick leave due to fatigue and “just not feeling well” over multiple years.

Anyway, you probably have gotten the jest; still more new symptoms it seems like each day. I’m just tired from writing this out.

Can anyone tell me if it is common to see MS and FM (Fibromyalgia) together typically?

How long will these symptoms last? It’s miserable right now.

Where/who should I go to be seen and/or should my family doctor refer me sooner rather than later based on all information above?

Thank you so much and God Bless,

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

obackus | @obackus | Jul 20, 2022

I feel your pain! I have gone through most of this for the last twelve years. Multiple MRI's, CT scans, blood work ups, x-rays, you name it, I have had it! I also had Chicken pox and a severe case of mono at age 15 (out of school for four months). I was told I had MS and/or Fibromyelsia for several years - neither of which was true. I was finally diagnosed with small fiber poly neuropathy with autonomic dysfunction by a doctor in Boston who works at Brigham and Women's Hospital just this year. I tried to get into Mayo Clinic but was unable to get an appointment becuase they had no remedies for SFN that were different than what I am currently doing. (Physical therapy, lyrica, duloxitine, daily walking regimen). I was told to keep moving no matter what because as soon as I stopped, I would be in a wheelchair. I do continue to work full-time and it is a struggle many days but I rest as much as possible too. Not knowing is the worst part of this whole thing. I pray for your strength and some results from a knowledgeable, caring specialist if you are able to find one. I know I saw a multitude of physicians who just shrugged their shoulders and said it was stress! Oh My!

Amanda Roe | @amandajro | Jul 20, 2022

Hello @vwolfe74 and welcome to Mayo Clinic Connect. You seem very in tune with your body and health history so I have to believe that you will find the answers you are looking for once you find the right doctor to see you through the process.

You may notice that I updated the title of your post to allow for more people to join this discussion now and over time. Members such as @sugarboo @debkl @ess77 and @anniemaggie have all previously shared suspicion and/or confirmation of MS and Fibromyalgia diagnosis so I am hoping they can join you here for some additional sharing.

May I ask where you have sought care and if you are open to traveling for the right fit?

vwolfe74 | @vwolfe74 | Jul 20, 2022

In reply to @amandajro "Hello @vwolfe74 and welcome to Mayo Clinic Connect. You seem very in tune with your body..." + (show)

Hi Amanda,

Thank you so much for the quick reply and connecting others with my post. It’s nice to be able to have others that understand what you are experiencing.

I am currently being seen by several doctors(Primary physician, neurologist and occasionally orthopedic doctor) in a smaller town called Crossville, TN. I am open to traveling for the right fit especially if it helps reduce the pain and fatigue that is happening.

Thank you again for reaching out. I really appreciate it!

oma07 | @oma07 | Jul 21, 2022

Is there anyone out there that has been diagnosed with Venous Return - I would like to know what treatment etc they are on - thanks

oma07 | @oma07 | Jul 21, 2022

I also have a huge problem with Magnesium deficiency, have had IV’s with Mg and feel so great after but I lose it very quickly- have had different blood tests to try to get to the bottom of this deficiency, I take Mg supplements and have done for a long tine but it is getting worse - Anyone out there with any answers???
Would appreciate it so much!

John, Volunteer Mentor | @johnbishop | Jul 21, 2022

In reply to @oma07 "I also have a huge problem with Magnesium deficiency, have had IV’s with Mg and feel..." + (show)

Hello @oma07, Welcome to Connect. We removed your personal email address from your 2 messages above. We recommend not posting personal contact information in the public forum. You can use the secure private message function to exchange contact information with another member.

Hopefully members who have experience with Venous Return can share their experience with you. I take magnesium supplements along with a few other ones for my neuropathy. Here is an article I found you may find helpful that talks about low magnesium, symptoms, causes and how it's treated.

-- Hypomagnesemia (Low Magnesium): https://www.healthline.com/health/hypomagnesemia

While we wait for members who may have experience with venous return, do you mind sharing what treatment you are on for your diagnosis of venous return?

oma07 | @oma07 | Jul 22, 2022

Many thanks for the Magnesium article, was interesting to tead.

I was only diagnosed just about a month ago with Venous Return by my Family Doctor - he told me to wear compression socks every day and take Venixxa (over the counter drug) for a month and let him know if there is any difference- found ankle swelling down somewhat, tingling and burning sensation in legs not so often. as far as I have read Doctor’s may prescribe this for up to two months only. Sent Doctor an email in this regards yesterday, will see what he comes back with!
Oma07

Thanks for getting back to me