Is this fibro?

Bones, joints and muscles
1

Ok so from the beginning, I'm a 31 year old female and always been very fit and healthy. Had a stressful year last year of doing my normal intense daily gym routine but also moved house twice aswel as getting married and having two young children. After all that I also ran the great north run last sept.. while training I felt tired and achy and then after the race I pretty much crashed straight away.

From sept to march I was the worst- exhausted, pains in every part of the body you can think of- head, arms, neck, chest, feet , legs plus eye pain : doctors robbed me off and told me I was depressed/ absolutely never felt depressed until falling ill.

From march 16 onwards I've gradually seen an improvement but still not had a day where I've felt 100%- no longer exhausted but Defo tired every day, no matter how long I sleep for (sleep isn't a problem for me by the way- I could sleep 12 hours every night if I could). Most of my aches and pains have eased up but I get headaches every day, eye pain and I have a stiff neck and back. Physio confirmed my back and neck is super stiff and has given me exercises to see if it helps the head and eye pain. Eye pain is like a dull sensation behind the eyes and headaches can be anything from a constant pain at the back of my head to random stabbing pains all over my head!

Also have a mild swelling under my tongue and a full ache there occasionally- I think this is a blocked salivary gland but going to docs about this next week. It's been like that all year.

Also have short term memory loss and occasionally use the wrong words sometimes- this is worse some days than others.

Occasional ransom second long pains at different parts of my body still and heavy arms if I overdo things.

Gps just think I have health anxiety (I've pretty much seen that's what they've written in my notes). Total rubbish as until sept last year I was never at the doctors. I've had CBC last year and all was fine, also had ANA test and nothing came up and had neck chest abdomen and pelvis ct scans and all clear.

After all that one of the docs I saw just before last Xmas said he suspected post viral fatigue/Cfs but my main gp never seems to want to acknowledge that. I also don't feel tired enough for it to be that.

A side note, I seem to get more thrush and cystitis than the average woman so don't know if that's related or not.

Does any of this sound familiar to anyone? Sorry for the long post!

2

Hi Danielle. Sounds like you are a very high achiever type. Hard on yourself sweetie? Setting very high goals for yourself? Perhaps a bit of perfectionism like me? Well it is no wonder that your energy has been depleted my dear girl! Wow! I am sure you would never demand from others what you demand of yourself. We women are known to be very hard on ourselves and our expectations. Your body has rebelled against you dear. That is what happens after long periods of demands and stress. You have perhaps not lived within your own limitations. Pushing yourself past your limits. You are not super woman my girl. And you are a wife and mother which is a very big job! Ok so Danielle it is time to take care of you! Slow down now and nurture yourself for a change. If you have FM it is a learning process. In this world it makes a woman feel like she is never enough. If you have a daughter Danielle, you will certainly not want her to feel that way. You will encourage her and nurture her to love herself. That is the same attention you need to give yourself now sweetie. And yes, your symptoms certainly do resonate with all of us! Do your homework dear and eat healthy and give your body what it is craving: Loving Attention. Maggie xx

3

You sound a lot like me. I was also doing intense work outs every day when my "sickness" hit me out of the blue. It started with twitches and everything else followed. I I was originally diagnosed with anxiety, which is probably true because when I started twitching I was terrified. I never had health anxiety before that. The doctor later ran all the blood work, testing for Lupus and a ton of other things, then referred me to a Rheum who confirmed it was Fibro. I have the random sharp pains, dull aches, stiff and aching in my neck and shoulders, ...pretty much everything you listed. It has been almost a year and I still have moments/days where I question if something else is wrong with me. I think there is an acceptance process with Fibro. If you can get a diagnosis, try to accept it from day 1! Good luck.

4

I had epstein barr first and then years later got fibro. They have similar symptoms and the docs just thought Iit was a reactivation or post viral and cfs. They also checked for lupus and lyme twice. It wasn't until my blood tests showed at the time that it was not. And I had new symptoms that led to the fibro diagnosis. It's a diagnosis of elimination and then persistence for answers.

Keep a detailed diary of aches and pains. Helps them see what is really going on.

5

Hey danielle, great post. You listed and explained things well. It sounds like you have a decent grasp of the issues, and understanding of yourself. Too bad the doctors you're deaing with don't seem to trust your intuition. I've been told I was depressed and/or anxious by many, even though like yourself I've never been either all my life, and only just starting feeling that way as a result of my physical symptoms and pain. In fact, being told "you're just stressed" is a massive source of anxiety for a person who KNOWS something else is wrong. Of course, true health anxiety (and hypochondria) does exist, but in much smaller numbers than doctors diagnose it nowadays. It's a way for them to get you out of the office, without you being able to protect yourself. It's a harmful label that does little good most of the time. Benefits the health insurance companies, not the patients.

Everything you mentioned sounds classic for FM, except being able to sleep soundly as much as you want. Insomnia to varying degrees almost always goes along with FM. That doesn't mean you don't have it, I'm just talking statistics. Everything else sounds very much like FM.

Fibro is a rotten condition, but catching it early (as you seem to have done) can help make it easier to deal with. The good news is that it doesn't kill you, is fairly treatable, and research is ongoing into more ways to deal with it or perhaps someday get rid of it. Curb your exercise right down (unfortunately) but get out for walks or something to stay limber, as best you can. Build strength slowly, now that you're coming up from the bottom. Consider the possibility you won't be as strong as you were at your running peak, but at the same time don't give up. Focus on your diet, research FM as much as you can (staying positive and evidence-based), and find a better doctor.

If the ache/pressure under your tongue isn't a salivary gland thing, it may be related to TMD, which is very common amongst FM sufferers. I get a sore jaw and aching mouth/jaw muscles, especially when I'm stressed or tired. I'm learning to listen to it as a warning sign I've pushed myself.

If you've got FM, the good news is you can learn to understand it and minimize its effects.

6

Hi Danielle,

I know it can be frustrating when we tell the drs that we are so conserned about our symptoms and they seem to ignore them. We have to be strong and explain to them what we feel and that u are aware of your own body.

I think the muscle pains and the fatigue, which can be mild ,moderate or severe depending on the person.I have had it for 6 years,and I'm finally seeing some improvement. I think the best thing to do is to get to a dr that you like and trust.

Try to eat the healthiest you can,and try to reduce stress as much as u can.

A lot of us are perfectionist and don't know how to say no. Ive learned the best thing that has helped me is pacing. I will do the dishes and mop the floor one day and do something else the next day. I also take rest periods, because my fatigue can be severe.

But since I was bedridden for 1 year, walking around and cleaning is great. I'm even going to start exercising slowly. There are supplements that might help with energy, I take b12 daily and it helps with energy. I take something for pain too.

Everyone is different some have more pain then others and some have more fatigue.

Just take it slow and do not over do it, or u will get worse.I no longer work because mine was severe.

If you need to take breaks where someone can watch your children so u can rest , that might help

Keep seeing drs until u find one that listens. It's not easy, but I'm sure u will. Feel better

7

Hi Danielle I was a full time worker full time mum full time house keeper with two kids as well at the weekend I'd do chores for my disabled mum,that was untill I started feeling ill,pain all over, no energy I felt as though life had been sucked out of me, anyway I visited the rhumatology and he did a full test on me there are 18 trigger points on your body and if touched a certain way the pain is very strong, you have to have over 12 or 13 to be diagnosed with fibromyalgia maybe ask your doctor to send you for the test,also I've not suffers with thrush but sores in my mouth and pain and dry eyes I do which the rhumatology think I have sjogrens disease. I also have arthritis in my hips and spondolisis in my spine and neck, sleep can be different for fibro patient's some only sleep for a couple of hours others could sleep longer and also this can change every night I have different amounts there is no pattern.also my memory is terrible and I have anxiety. Just try and not stress as that aggravates fibro and it can knock you off your feet, try meditation and swimming they help, I'm sorry if I've misspelled anything lol, hope you get sorted out soon and if there is anything I can help with just ask sending soft hugs

8

Hi carol , Ive seen a rheumatologist who did the tender point test on me - I only had about 5 , I do have other symptoms, some pain ( not severe)

Insomnia & anxiety.

She doesn't think I have fibro. .

Do you remember how many tender points you had when you got diagnosed?

thanks

9

Hi

I'm tingling like pins and needles all over even in my face lips etc is that fibromyalgia ?

Dr says it is but I can't deal with this every day 😢

My neck creaks when I move it too

Also have sinusitis having op few weeks time I'm so scared of the stinging tingling feeling

10

The standard is 11 out of 18 points for fibro. However, I know people who have less tender points but more symptoms. Fibro is a guessing game and is hard to diagnose without a definitive test, which they are working on but not available yet.

So in the meantime, you have to get all other possibilities ruled out. The normal gamete of blood work to rule out Lyme, lupus, arthritis, ms, epstein barr, thyroid, parvo, post viral infection and so forth. Fibro can mimic other illnesses so they have to be ruled out first.if they have done this then it's off to the rheumatologist.

Time for tender point exam. But some doctors aren't familiar with it or do it correctly.

Rheumatologist should perform it. Now the one I had, did it when I had come out of a flare so not all of my points were still tender. I have a few that if you touch me i will hurt you and others I'm OK as long as not in flare. Sore, dull ache not constant pain. Had to get it done again while in flare.

It sounds like you just went though a very emotional stressful time and your body reacted. We've all done it. Take it easy. Try not to stress, eat healthy and hopefully the inflammation will settle down. We are here if you need us.

11

I've had fibromyalgia since 2008 and I know the feeling hun. I believe you have fibromyalgia and this could be a big part on why you hurt in every part of your body. I have constant chronic pain through my whole body, my whole back, arms are tender to touch, chest wall feels inflamed and hurts to sneeze or cough. I have tons of tender points when the doctor pushes on different parts of my body. It feels like I was hit with a baseball bat all over. I have no energy and always tired. I take narco and ibuprofen 800 every 8 hours for pain and it truely helps, when I take it, it takes all the pain in my entire body away and I feel like a normal person and can function normally but when the meds wear off I'm back to hurting so bad that I can barley move. I've tried Lerica, cymbalta, savella, and gave Penton but none of these meds have helped me, I've tried muscle relaxers, tramodol, flexeral, and nothing helps but the narco and ibuprofen when taken together. I see pain management every month . I also have poly neuropathy which is nerve damage in both of my legs which the neurologist said could be another reason why I have so much pain everywhere. I'm only 32 years old and feel like I'm 90! I use to be so action e, use to run, do back flips, roller skate and walk for hours and now I can't do anything. It's horrible and I get depressed because of the pain I have cause I can't do the things I want to do anymore.have you seen a neurologist? If not I think you should, he will be able to check your nerves for any problems. I hope I could help. Good luck and hope you feel better.