Can anyone give some advice here? Desperate me

Bones, joints and muscles
1

I am 23 this year and I dont know if I have Fibro but I have been having some pains all over my body since a year ago. When it first started, I went to see orthopedics and slowly my doctors transfer me here and there with no answers. I am going to this rheumatologist in 2 weeks time but I stumble across this forum. Can I ask how you guys started to have symptoms and what are they? The only thing that doesnt match me with Fibro is the tender points. I dont know what is consider as tender points. I do not have issues with my hips or backbone either. I think the pain is so difficult to describe and compare when I search for infos online.

Here is some of the current symptoms that I have. I have morning stiffness in my knees and ankle but it gets better after light activites throughout the day. I feel like the pain comes and goes without any specific reason. It will sometimes swell and redden at some areas. The pain never go away, but it will be mild not obvious pain somewhere in my body. For example, when I sit in a position for sometime, the joint stiffens and the pain never go away until I rest enough at night. 

Sometimes when I sleep, I can feel my leg/body being so heavy that I had to painfully turn my body if I were to toss around. Both muscles above my knees got much weaker that I need to use my hands when I stand up. Now I choose not to squat or I will just bend over to reduce the chances of me using my knee strength. Multiple blood test shows that I am negative of Rf factor that's why I am excluding arthritis problem. 

Does anyone have similar symptoms as me? I am pretty desperate for answers

2

Hi, I'm in a similar position to you and still have no decimate answers. I hurt all over everyday. Neck, shoulders, arms, hips, back and legs. I also get pins and needles and tingling feet. I had pneumonia back in May and was in hospital and these symptoms started after that. The Dr mentioned cfs/Post viral syndrome but said if I still hurt when I next see him (in 2 weeks) we will discuss fibro. My friend has it and lots of things she says are what I feel. I'm sorry I can't give you any answers but want you to know your not alone. I have a weak positive rf but Dr doesn't think arthritis. I hope you get some answers soon and please update us. Take care, Faye xx

3

Sorry, definate answers, not decimate 😄 xxx

4

The rheumatologist is a good place to start as there are more than 1 rheumatoligical diseases that could be causing soreness and swelling. Lupus is one, have you been tested for lymes?, thyroid?

If it is just your leg that's the problem then it may be a localised problem.

Do you have a history of sports, your young but I suppose intensive sports could cause early osteoarthritis in your legs. Likewise if your very sedentary this can cause your joints to deterioate. Is there any family history of any diseases?

Have you had the vitamin d, b,folate, iron etc tests?

As hard as it is I would suggest not to stop using the legs, don't do anything strenuous but some light leg work will keep them more mobile and keep and build up the strength in them. Also I know from a knee problem that the more you avoid using the legs the more your lower back will become strained.

Start writing down your symptoms now with 2 weeks to go and any questions you might have as you will forget when your in your appointment. Try to categorise the pain on a scale to 1-10 and try to tell them sharp, burning, stabbing pain etc. Don't let them fob you off and make sure you get tests to rule out everything before they diagnose you with fibro.

I've read loads of stuff online and a good percentage of people get diagnosed with fibro and then years down the line find out they had a thyroid issue or lymes or somethig else.

Do you have any other symptoms, brain fog, extreme tiredness, memory issues, bad sleep? Even with those it's hard to say it's definitely fibro as just being in pain can affect sleep and can then cause brain fog etc.

Was there a starting point? Have you had a recent operation or a baby or a viral infection?

These are all things you are likely going to be asked so to have them all down on paper prior will be helpful.

Good luck

5

I actually started when I was your age.

My symptoms were back aches, usually lower, frequent insomnia and joint pain in my hands. The pain would usually subside as I worked throughout the day but at the beginning and end of the day I was in pain. Sometimes I had ankle swelling but not as frequently as I do now.

Sometimes I would get blurry vision and occassional headaches but at the time it started those were isolated incidents.

At the time I just thought I was overworking myself because I was working full time and going to school full time.

As the years passed more symptoms would become a regular part of my life. I think it's great that you are so aware of your health at your age and asking questions about how we started.

6

Thank you for your advises. I do not have any surgery nor any viral infection. I didnt have any falls either. I did quite a few blood test in the past and all came clear except for CRP are a little high. 

As for the memory issues, I always consider myself as a forgetful person so I am not sure if its counted in. Symptoms like insomnia do they happen everyday? How do classified them as the cause of fibro or its just pure result of being too stress? 

The pain happens around both arms and legs. I always tell the doctors I feel the pain is travelling around my body. One day here and one day another

7

It has happened for more than a year to me. I have already forgotten the feeling of pain free when I move around. Although the pain is not severe, the dull pain is always there. Now my muscle strength around the thighs are greatly reduced so it makes me feel lazy to move around

But I dont get the blurred vision problems and I dont know if my migranes are due to this. I just hoped I can get a diagnosis and start doing something about it

8

Thank you. Its true I am not alone in this. Does this happen to you as well? Like I spent the whole day walking or moving about, I can walk fast and with minimal dull pain. But if I rest and dont move my leg at all, the pain will come in when I try to move them. I can feel my joint stiffens greatly and the stabbing pain will be there.

9

The basic tests they use for Arthritis doesn't always show up Rhuematoid Arthritis.. There is a more specialised blood test they can use though.   My friend was a mess, all stiffened up with clawed hands etc, and had to be helped with toileting, dressing and hair brushing, showering and she couldn't cook.  She was apparently 6 months from a wheel chair.  Being treated for Fibro.  She moved states to go live her mother.  She lost so much wieght and looked awful, but insaying that always had a smile and was positive with folk.  

Luckily she got in to see a Professor at the local hospital in Melbourne and he knew straight away just looking at her that she was a 'Full Blown case of the worst type of Rhuematoid a person could have'.   All her tests still showed up negative for Arthitis etc...   But he knew this, and he order the 'specific test' which of course proved 'Positive' for it.  

He saved her from a wheel chair.  Disease modifying drug, weekly chemo tablet, painkillers of all discriptions, BP tablets...    

It had taken two years before she got to see this Professor.  Her issues started one day at work with a painful thumb.  Being a front desk, receptionist she did a lot of typing.  By the next day the pain and stiffness took over her other thumb and ankles.  By the 3rd and 4th day she was crippled.  

Bless her....  my dear friend.  She had suffered so much with RA and Fibromyalgia  on top of it all.   I do miss her.  It was meant to be that we would meet.  She had no one to relate to about pain issues when she moved to NZ.  

We begun to bang into each other in a period of a month at places, and become very good friends.   So gutted she passed away suddenly coming up 2 years ago 30 December.

Chronic Fatigue is a common theme with Fibro and ME, that the medical relms are now convinced it's one of the same, because some ME and some CFS suffers have pain issues the same as Fibromyalgia sufferers..