Has anyone else had it like this? Pain last?

PennyBlacksmith

New member
Joined
Jun 3, 2020
Messages
4
Reason
Undiagnosed
Diagnosis
00/0000
Country
UK
I'm 36 y.o. Since I had my kids almost 17 and 13 years ago, I've had various symptoms and only two that the doctor was able to say what it was.

• DIAGNOSED

IBS
Benign positional vertigo (random dizziness)

• SYMPTOMS

Palpations, chest pains/weird feeling.
Chronic fatigue.
IBS.
Depression and anxiety.
Headaches.
Sensitive to touch, smell and sounds.
Restless legs (and arms).
Cognitive trouble (concentrating, thinking of words, memory issues, speaking).
Dizziness.
Hot/cold flashes.
Very painful periods.(pain going from lower back down into legs)

And now a few weeks ago my legs started to hurt when I was sat for a long time, then at bed time as well when laying down. Then pain in my arms when laying down or resting them on something. I can relieve the pain by standing and walking around. It gets worse the longer I'm sitting/laying but once I do fall asleep, I wake up without the pain.
The last few nights I have been struggling to get to sleep as when I am falling asleep or been asleep for a little while I wake up feeling like I've been holding my breath.
Over the years I've had multiple blood tests and only came back once last year with inflammation markers. Possibly unrelated to anything?. I am having bloods done again next week since the pain is a new symptom. But I was wondering if any of you who are diagnosed or any doctors with experience of FM patients, had the other symptoms before the pain? Does it sound like FM?
 

FibroKate

Member
Joined
Jun 2, 2020
Messages
22
Reason
DX FIBRO
Diagnosis
05/2019
Country
GR
Hi, Penny!I 'm 31 years old but I have been dealing with chronic pain and fatigue since I was a teenager. Unfortunately, I spent so much money and time on doctors telling me various things but without taking me seriously. As years passed, I had more and more symptoms. I visited so many neurologists and underwent lots of examinations, even tissue biopsy from my leg. After so many MRI's, blood tests and so on thankfully the last neurologist told me to visit a rheumatologist because he was sure that I have fibromyalgia. What I want to say is that these kinds of syndroms are very difficult to be diagnosed since their symptoms are similar to others. The certain thing is that doctors can see via examinations if you have MS, Lupus, rheumatologic diseases, such as arthritis etc. because they are obvious through specific examinations. As for fibromyalgia, I can tell you my symptoms but it is of high importance to visit a doctor or maybe more to get a professional opinion. So, I suffer from RLS and arms, IBS, painful periods [but I have polycyctic ovary syndrome], insomnia, chronic pain, migrains, anxiety and depression, diziness, clumsiness, cognitive issues exactly like the ones you have aforementioned, stiffness [especially during mornings], burning eyes, sensitivity to touch, smell and sounds, often infections, blurry vision etc. The most characteristic symptom is unbearable pain which cannot be handled or relieved 100% not even for an hour...
Some of your symptoms match the fibromyalgia's yet without a doctor's diagnose as well as examination no one can answer you properly. Finally, you have already been a mother twice so I'm not aware of labor's consequences, either short - term or in the long run. I hope I 've helped you and not made things even more confusing!!! Good Luck!
 

PennyBlacksmith

New member
Joined
Jun 3, 2020
Messages
4
Reason
Undiagnosed
Diagnosis
00/0000
Country
UK
Thanks for the reply. I will see what, if anything, the bloods show this time.
 

Mirador

Member
Joined
Nov 27, 2019
Messages
12
Reason
DX FIBRO
Diagnosis
01/2017
Country
US
State
MI
Hi, Penny! You're nearly half my age, so I'm approaching things from a different perspective. The list of symptoms you included in your comment could have been written by me. As a matter of fact, it HAS been written by me, back when I was keeping notes on all the various, seemingly unrelated symptoms I'd get throughout the day. They all seemed so random and unconnected. I even had (still do sometimes) the thing with waking up feeling like I'd been holding my breath. I don't believe it's sleep apnea in my case, though I've never had it ruled out by a sleep study.

I've had inflammation markers in blood studies probably every time I've ever had them done. Nothing drastic, just always there. A few years ago, when I was having an annual physical and was unable to roll from my back to my side on the examining table at the doctor's office due to severe pain, she suggested it could be rheumatoid arthritis, and she referred me to see a rheumatologist. I'd had random pain to varying degrees for several years, but blamed it on getting older (I was in my 60s).

The rheumatologist did more extensive bloodwork, and the thorough hands on exam all over for tender points. When he was finished reviewing my my bloodwork and conducting his exam, he said, "You do have fibromyalgia, but I'm not finding any rheumatoid arthritis, lupus, or other autoimmune disease." In the back of my mind I'd wondered about my having FM, as I have a few cousins who were diagnosed, but I didn't expect him to actually confirm it. He said it almost off-handedly, as if I already knew I had it.

I'd been having so much trouble with all the symptoms you listed that I could barely believe that there actually may be one condition under which they all can fall. Even after getting the diagnosis, I was reluctant to believe that all these seemingly unrelated symptoms now made sense.

I haven't had periods since I was 50, but when I had them, and I began them at age 11, they were excruciatingly painful - definitely pain down my thighs, and to the point where I'd throw up from the pain. Fortunately in my adult years, ibuprofen was discovered to be the closest thing to a remedy as one could expect, and the most agonizing years were behind me. Hopefully you are able to take ibuprofen - 600 mg. was the perfect dosage for me, any less was useless and any more didn't reduce the pain any more than 600 mg. did for me.

As to your question, your list of symptoms, plus pain, definitely sound like FM to me, because I lived that same story. While I believe I've had it for many years prior to diagnosis, I would confirm that I did have all the strange symptoms PRIOR to the pain increasing to a more significant issue than it had been. My IBS symptoms have also increased as time has gone on. The palpitations, which I had most of my life, have progressed to the point of becoming atrial fibrillation, and now I see a cardiologist and take anti-arrhythmic meds for that symptom. So were they part of FM or just something that was going to happen to my heart anyway? I can't say.

All in all, I'd say that I just feel like my body is over-sensitive in general to most kinds of stimuli. And I suppose that makes total sense with FM - oversensitive nerves. It all fits. It's all a bummer, but it all fits.

I'm grateful that I get along as well as I do when things are flaring up - but I do look fondly back on my younger days when I never had to think about how I was going to feel on any given day. Now, I rarely think about going on a trip or whatever, as if I wake up and it's a lousy day, I only want to be home - I can't enjoy anything. When things are flaring, I don't even plan trips to go shopping the next day. I have to wait and see how I am when I get out of bed in the morning!

It might be helpful to see a rheumatologist as soon as you can, to stop the wondering. I was lucky enough to be diagnosed quickly once I did. And if you do get a FM diagnosis, it's far from the end of the world! You'll be in good company! All the best to you!
 

PennyBlacksmith

New member
Joined
Jun 3, 2020
Messages
4
Reason
Undiagnosed
Diagnosis
00/0000
Country
UK
Thank you very much for your reply. I will ask about a rheumatologist. The doctor previously mentioned rheumatoid arthritis, but ruled it out. So FM is looking likely.
Thanks again and I'll keep you posted.
 
Joined
Mar 17, 2020
Messages
20
Reason
DX FIBRO
Diagnosis
09/2007
Country
CA
State
QC
Good morning Penny ,
I have all of the above symptoms and its linked to fibromyalgia. Also have bouts of nausea with all this. As for the hot flashes I get them because of menopause and medication. The sensation in my legs have been steady for a month now and does wake me up at night...
I began using lavender body oil, massage it on my full legs, calves and under my feet it seems to calm down the sensation and it smells good too.
Hope this helps out .
😊
 

Gil

New member
Joined
Jun 17, 2020
Messages
2
Reason
Relative
Diagnosis
00/0000
Country
ID
State
JK
Hi Penny,
My Dad (mid 50s) have really similar story and symptoms like you. He has meeting many specialist such as rheumatologist, therapist, orthopedist, neurologist, rheumatologist, pathologist. He took many test ( ANA, MRI, X-ray, blood, stool, etc) and it ruled out everything, including nerve compression, RA, lupus, and other auto immune disease, so he is remain undiagnosed. All of the specialist puzzled and they are just giving my dad omeprazole, ibuprofen, and etoricoxib to fix the pain.

I hope your doctor can diagnose you, and if they did, please let me know what kind of tests did you take.
Wish all the best for you!
 
Top