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Claire1966

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Hi – new to forum. Wondering if anyone thinks this sounds like Fibro. It has been suggested by a doctor in the past but no one has ever addressed it further.

I am 51, female, and in generally good health. I do have irritable bowel syndrome - have had it for 30 years. It presents with bad stomach pain and diarrhea. I have bouts of it off and on. I also suffer from occasional anxiety. Nothing horrible but I've learned to control it. About 14 years ago I experienced my first ‘muscle spasm’ in my back. I got into a cold pool in the summer and a spasm began in my mid back and lasted several days. It would spasm about every 10-15 seconds, constantly.

I would experience one of these episodes once a year, typically in the Summer after going into a cold pool, for the next few years. Just dealt with it. Eventually they’d occur twice a year and a cold pool did not prompt it. I’ve been to several back doctors, had MRI and gone to chiros and physical therapy. The most recent orthopedist said he thought it was due to ‘rib dysfunction’ in my thorasic back. I also have VERY mild scoliosis. He said my back is weak, and something very minor can set it into spasm. My back continues to go into spasm about 2x a year – I take Valium and Tramadol for pain until it finally stops.

6 years ago I had bloodwork run for some general dizziness and my ANA was elevated so doc sent me to a Rheumatologist – he said you do not have an autoimmune disorder and dismissed me. Nothing ever became of that and my doc did not further follow up.

I have had Chiros, massage therapists and physical therapists tell me I am filled with trigger points. Areas all over my back are extremely sensitive and painful to the touch. They will find certain muscles that they say feel like ropes and I don’t even realize how much they hurt until they start to push on them.

A little over a year ago I began to notice that each morning when I woke up my hands were very stiff and painful. My knuckles her when I bent my fingers. My wrists hurt too. I went to an orthopedist who specializes in hands and he ran bloodwork – no arthritis etc. He took xrays and saw no arthritis. He suggested carpel tunnel and wanted to run nerve tests but I did not return because I figured if I did have carpel tunnel – I wasn’t going to have surgery anyway. He gave me wrist guards to wear at night too – no help.

So now we are in present day. I had intense pain one year ago that we thought was a kidney stone attack. Was in ER and they saw a 7mm stone in my kidney but said it could not possibly be cause. Never had pain like that before. Stone stayed in kidney until I had it lasered out internally under general anesthesia back in april. I had a ureteral stent in place for 8 days. I was on diclofenac anti-inflammatory which I think helped my hands. Upon recovering and going back to work by back went into spasm for about 4 days. That was last episode.

Every morning when I wake up my hands/fingers are stiff and painful. When I get out of bed it hurts to walk – my ankles are stiff and so are my knees. This clears up but returns if I’ve been sitting for a little while. My neck muscles hurt me every day (desk job).

My hands (fingers, wrists) continue to bother me throughout the day – they ache and are almost always cold. Neck bothers me too. My left knee bothers me – it will flare up out of the blue and then be fine. I don’t get any numbness but sometimes tingling in hands and when I work out at gym and lift 5-lb barbells I will get a lot of tingling in my right wrist.

A few weeks ago I changed internists and went for a consult – and explained my aching hands to her. She did not think this sounded normal. She ran a complete blood panel etc and called me to tell me my ANA was borderline high. She wanted to run a few other bloodtests (for things I know I do not have) and said once they are in it is likely she will send me to a Rheumatologist. She did run tests for Rheum arthritis, thyroid panel, celiac disease (which I’ve been tested for) and a bunch of other things.

I sleep okay but not great and every morning have to get out of bed because my back and neck hurt – I figured maybe it is our mattress. I am pretty fatigued in general but not to the point where I can’t go to work. I sit with a heating pad on my lap or on my back or neck all day.
Feel like an old woman!


I have an appointment with the Rheumatologist I saw 6 years ago – he is supposed to be excellent. And I had none of these symptoms (never mentioned back spasms) back then. I never connected the back spasms to Fibro - and am now wondering if there is a link.

I'm also in menopause - haven't had my period in a little over a year. Wondering if the pain is related to that possibly too.

Thanks!
 
First of all, welcome to the forum!

I can only talk from my own personal experience, but to me your symptoms are not very typical of fibro. For me it was the combination of general aches and pain and extreme fatigue, which included waking up feeling exhausted every single morning no matter how many hours I had slept. I then went to various doctors, they did all kinds of blood tests, all came back normal and I was simply dismissed over and over again. They will often blame mental illness/stress, but I knew it was more than that. You just know it. It wasn't until a doctor decided to do the trigger point test and really listened to all my symptoms (incl. IBS that started with all of my other symptoms) that I was finally diagnosed.

In your case, your ANA levels seem suspicious to me. They can be high/positive once, but you had have it on the higher level more than once, so I wonder whether the rheumatologists were thorough enough. Have you asked the specialists whether it could be fibro? Often they need some stirring in the right direction for a correct diagnosis.

Sadly, it could also all be menopause. I have another decade, but I am seriously dreading it because my mom had a very hard time during hers. I will be seeking all the help in the world when mine comes around, I really want all the meds, therapies, alternative stuff - everything. I am so not looking forward to that. It is a huge change that the body is going through and it can manifest in the strangest ways, so I really hope you are talking to your doctors about it and have been referred to a specialist.

In the meantime, it is so important to stay as healthy as possible. My desk job destroyed my neck/shoulders. So take lots of breaks at work, do all the exercises the physical therapists tell you do to, do things you enjoy, spend lots of 'me-time' and try to stay away from stress or find new stress-management methods such as breathing and basic yoga moves. And keep talking to your doctors and loved ones.
 
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