Fibro or MS ???

[jam123]

Hello! I am brand new here and have been dealing with so many issues over the past few years.
A little about me: I am almost 50, dx Hidradenitis Suppurativa, Diabetes T2, Degenerative Disc disease, DOuble sided sciatica, arthritis, and as of Wednesday my Rheumotologist said I have either MS or Fibro and if I can't get a dx of MS when I see the Neuro next week he wants to start treating me for Fibro. I have been on Gabapentin and Lyrica with horrid side effects and can't take either. I am very curious what might be able to help me though I was told there was no magic pill lol

Some of my symptoms I have dealing with for years are electric like shocks in legs, face, arms, & stomach.
Severe headaches and or migrains almost everyday.
Sensitivity to light (natural)
Stomach flanks feel like they are being squeezed tight.
Horrid night sweats, feel like I am on fire all of a sudden
Legs going out, tripping, and or feel numb
Knees feel numb when I stand up constantly
Feet numb a lot
I choke often when I eat and drink
Joint pain in elbows, knees, ankles, feet, fingers
Hand completely numb at times
SO much pain in hip muscle I almost had to call for help when walking my dog 6 blocks.
PAIN PAIN PAIN
I walk into a room and can't remember why.
Trouble sleeping: getting there, staying there, or over sleeping
These are some of my problems.

Basically my body feels like it is going haywire but I do have good periods short lived as they may be I am told excercise can help but with my HS basically it kills me. If I sweat I end up getting abscesses in my sweat glands at times bigger than baseballs. I am at my witt's end.

I am SORRY this is so long but I just don't know who to talk to

Here's a funny thing though, I look fine! I have been carded buying alcohol, I don't have to dye my hair, and although not a skinny mini, i look not bad. People usually think on average I am in my early 30's. AND that causes a lot of problems with my bf's family who some accused me of faking, and others think I am doing nothing to help myself.

I get very angry and thank God for my family who understands and I am mad this is happening to me, all of it, but what I don't admit is how at times I get depressed. I am very confused at this point and wondering if anyone has any advice

THANK YOU for taking the time to read my mini novel ))))))

 

[nicole71]

Hello. I have all the same symptoms and more and was diagnosed with fibromyalgia 6years ago. I am 45yrs old. I do not take anything for the pain by choice. I try to do moderate exercise like walking when having a flare up. I hope the Rheumatologist can figure out exactly what is going on with you so that you can treat it. I hope you can find some relief

 

[jam123]

Thank you so much! I do like my rheum and have a lot of confidence in him after seeing him. Hoping to learn more after seeing neuro in 3 days. I do have quite a few more symptoms also but am wondering how do you deal with the severe pain? Just rest? I know lyrica and gaba do not work for me so I am curious to what might. Between all this and my hidradenitis suppurativa (extreme pain) I am not sure what to do. My Dr and I laugh that I really am allergic to exercise lol. My dr is FABULOUS and has always been there for me and doesn't hesitate to get tests done and give me referrals. SHe is actually a NP so I don't know if that makes a difference or not with empathy but wow, I wish I found her years ago. Wishing you a pain free day!

 

[Shyest]

I am so sorry you are going through all this!

I am almost 50, dx Hidradenitis Suppurativa, Diabetes T2, Degenerative Disc disease, DOuble sided sciatica, arthritis

Some of my symptoms I have dealing with for years are electric like shocks in legs, face, arms, & stomach.
Severe headaches and or migrains almost everyday.
Sensitivity to light (natural)
Stomach flanks feel like they are being squeezed tight.
Horrid night sweats, feel like I am on fire all of a sudden
Legs going out, tripping, and or feel numb
Knees feel numb when I stand up constantly
Feet numb a lot
I choke often when I eat and drink
Joint pain in elbows, knees, ankles, feet, fingers
Hand completely numb at times
SO much pain in hip muscle I almost had to call for help when walking my dog 6 blocks.
PAIN PAIN PAIN
I walk into a room and can't remember why.
Trouble sleeping: getting there, staying there, or over sleeping
These are some of my problems.

I just learned about HS this week because I believe my friend has it. She is trying to get a diagnosis, but is encountering difficulties for a variety of reasons. You have my sympathy for dealing with this awful condition and everything else. It truly sounds horrible.

Where are you with menopause? Sometime that relates, I tend to notice women develop health issues at specific times related to menopause from what I have read on some other forums, just something I wonder if it's related. The only thing I think they could label this if it is relevent to your situation is the night sweats and the brain fog, menopause has a type of brain fog too. I definately do not think your symptoms are related to this, but I do wonder if doctors will perceive this playing a role for you.

I'm seeing a lot of stuff on this list that screams "nerves" (underlined, except pain because I don't know what type you are experiencing) so it sounds like you are definately in the right family with MS and fibro. Nerve pain tends to have certain keywords to me as a pain patient (not a doctor!) - burning, searing, electrical, and numbness. CRPS, Fibro, MS, Neurotransmitter imbalance/dysfunction depending on the location of the electrical feelings**, Peripheral Neuropathy (especially if diabetes is dx, but it isn't necessarily because of it in all cases), Dysautonomia [can be related to a type of neuropathy]. There are probably many many more but these are teh common ones I have run into.

**Neurotransmitter imbalance or withdraw from SNRI/SSRI class drugs can cause perceived "electrical shocks" or "brain zaps" in the brain, but sometimes also the stomach.

Has the joint pain changed at all in location, severity, etc in anyway since you got the arthritis (I'm guessing osteo?) diagnosis? Some people might feel that fibro includes joint pain, but personally I do not, and am possibly biased because I have an autoimmune type arthritis. I consider fibro pain to be nerve and muscle related, not bone or joint. I personally feel that the joint pain which I totally believe people have is coming from another cause, even if it's a subclinical autoimmune or genetic connective tissue disease.

The choking worries me, even though I have had that symptom before- mine was temporary. Is this constant for you, episodic, how badly does it effect you on a daily basis? I don't typically associate the choking on liquids in particular with fibro. It makes me worried something else may be going on, if you have fibro, in addition to that.


Here is my personal pain description guide:

Bone pain points more in the direction of a vitamin D deficiency, but can be caused by other things. It tends to be deeply achey and even a sharp ache, it is medium-severe pain for me. It also doesn't happen to me often.

Muscle pain while common in fibro, some can find relief with magnesium creams or supplements, potassium, and vitamin D- these have to be balanced properly however- you especially do not want to OD on potassium. I prefer food sources for potassium and supplements for D and magnesium. Muscle pain can be dull and achey or sharp and twisting and sore and inflammed and sensitive to touch or ripping. It tends to run the whole gambit severity wise. Magnesium has been known by some to help with headaches and possibly even migraines.

Allodynia pain is superficial as far as location, it generally hurts in the surface layers of an area of the body. It can feel electrical, but often it aches on some mild-moderate grade until the body interacts with a non-negative (negative: needle, claw, hammer; non-negative: blanket, a hug, being poked gently, wind, shower) stimulus and then it feels very very bad until the stimulus is removed or sometimes until a while after that.

Hyperalgesia is pain related to negative stimulus. What hurts me doesn't necessarily hurt a normal person that bad if at all. It feels like the equivalent of a broken limb in proportion to a scrape or boo boo to pain tolerant people even. IVs hurt a lot and I'm not looking forward to a nerve conduction test if I ever need one.

Nerve pain is often hot, burning, searing, electricution like pain... It acutely hurts and aches for me, it tends to be localized in specific places for me, which may or may not be symmetrical. My pain tends towards symmetry.

Joint pain varies from achey and dull, to achey and sharp, to jagged glass stabbing into my joints. It runs the gambit from slightly annoying to completely debilatating, can't do anything even hold my phone type pain. In some people it is accompanied by swelling or redness, but that isn't always the case for me and I get no redness.

Inflammation tends to feel warm, it can be stinging, it just feels raw - but deeper than an actual burn or scrape. I get pleurisy which is inflamatory type pains in the pleural (lung) lining. It feels like someone has stabbed me and I can't inhale or move or talk or laugh or I will feel worse or die. Inflammation related to my pleursy feels different from regular inflammatory pain. The pleurisy is from an autoimmune disease. Sometimes inflammatory pain can be confused with swelling or stiffness, but not stiffness-locking in my experience.

Numbness can include pins and needles for me, or not. I usually don't randomly just get numbness, if it happens it happens because I have cut off proper blood flow by sitting on something funny or laying on something funny.

 

[jam123]

Hello Shyest! Well, about a week ago I received my blood test results after meeting with my Neuro. It seems, well I am positive for Sjogren's syndrome and my HS surgeon told me I have RA but until I hear that from Rheum, I don't want to believe it.

My test results were Positive SSA/Ro
Neg SS/LA
High ANA-Antinuclear anti bodies

Last time I saw Rheum (which was first visit) he said Fibromyalgia and want ed to hear what Neuro said. Rheum said NO WAY do I have auto immune. Ummmm, think he was 100% wrong. I did like him okay at the 1st meeting but do not know if I can trust him.

Neuro looked at my skin discoloration and said asap that I do have some kind of auto immune. He was 100% right. He also says I have small fiber neuropathy and I have 2 MRI's coming up soon for my spine. I also have degenerative arthritis and waiting to see if it is RA-but I doubt it. I think my surgeon read incorrectly

On top of this my diabetes and HS. HS is a terrible disease and I know quite a bit but I don't know if others here want to hear about it so please pm me here or at jarch2b g mail.

As far as my pain-tonight felt like several of my fingers and toes had caused me agony!!!! I don't get much if any swelling but the pain dear lord! I ended up taking a pain pill which is how I can type to you. I get pain everywhere in my body. Joint hips muscles- electric like shocks mainly leg nd face but everywhere-migraines daily almost-and I would tell you more about it but it is hard to remember lol---brain fog!!!!!!!!!!! A HUGE concern I have now is my coughing constantly and choking constantly. The choking can be a number of things but I read with Sjogren's it dies happen due to lack of moisture. I do not have the dry eyes of this disease yet, but i do have the horrid cough and choking, muscle pains, liver stuff, fatigue, numbness, and so on.
What I don't understand is why my pain meds don't touch the pain much in my fingers. It helps for a short time and boom there is the pain!

I have so much going on at times I feel like a crazy person but am so thankful I have tests to prove I am not. Does that make sense???

I really would love to talk to you more about what is going on with you because it seems like a lot and I can totally relate!!! I really hope you email me!

As for your friend with possible HS, USUALLY they will take a swab and see if it is MRSA. It should come back negative. You can have MRSA with HS but it is rare. I have had this done many times. Also, the abscesses will be in the apocrine gland area. Armpits, groin,rectal,breasts. At times also the head and face. Some people have food allergies that seem to set off flares where my is I have excess sweat glands and if I sweat for any reason, or get to stressed,,,WHAMMO. Again I will tell you more on it in private.

Hope to hear from you soon! Wishing you a pain free day! J