Feels like the pain is everywhere...

crabby85 · 13. Jan 2014, 05:49

Hi all,

I hope you dont mind me posting here as i have not yet been diagnosed. (Blood test was negative for arthritis but been referred to the Rheumatologist - just waiting for my appointment to come through)

Im just feeling so lost atm and in alot of pain. I decided to start a 'pain diary' - just to help me get some feelings out and hoped it would help me make sense of things - but looking at it, it just seems so bizarre to have pain in all these places!

Im hurting in so many places - feet, ankles, knees, legs, arms, wrists, fingers, hands...and the pain isnt one type of pain. Its a mixture of dull aches and sharp shooting pains. The pain in my wrists i can only describe as what i imagine 2 broken wrists to feel like!

I dont really know the point of this thread

just have no-one around me that understands what its like to be in pain. I have a feeling my family are getting tired of my complaining but its hard not to when i dont know whats happening to me. I just feel so alone with this.

stickywicket · 13. Jan 2014, 06:56

Hello crabby85. Of course we don't mind your posting. One negative blood test doesn't mean much. A lot of auto-immune forms of arthritis give negative results.

I think the point of your thread is that you are in a lot of constant pain which no-one around you can understand or relate to. Of course they can't. It's very hard to understand such things if one has never experienced them and so it does result in a feeling of total isolation for the one in pain.

I do hope your GP is giving you some medication while you await your appointment. Anti-inflammatories and paindullers can help though, if it is indeed arthritis, they won't get rid of it completely. Nothing does. We learn to live with it.

Please keep talking to us if it helps. We can't diagnose or prescribe but we can empathise.

dreamdaisy · 13. Jan 2014, 07:04

I'm in the same boat (but I know why, it's not fun, is it? ) I don't need to keep a pain diary now because it's the same day in, day out with the occasional less hurty days but, pre-diagnosis, it is a very useful tool. Do not become obsessive about it, use a scale of 1-5 for pain levels, tiredness, moodiness etc and note if anything helps, e.g. a hot bath or sitting with your feet up and knees supported, that kinda thing because that will help the rheumatologist to gain a wider picture of you and how you are being affected.

We do know what it is like to be in constant pain, how tiring and wearying it can be and how demoralising. Don't expect those who are not to grasp it and do make the effort to show sympathy when they fall apart because they've sprained an ankle or whatever.

DD

beckie89 · 13. Jan 2014, 08:26

Crabby 85, hope you get some answers and start to feel better soon!

It took me nearly 2 1/2 years, and a flare up where I couldn't physically move for a week to get where I am now.

Doctors thought I was too young to have arthritis, so they physically didn't entertain the idea. Some of my tests came back negative as well, so just keep pushing at it.

I really do hope you start to feel better soon!

Bex x

Kitty · 13. Jan 2014, 08:55

Hi Crabby,

I am what is known as sero-negative, which means my rheumatoid factor came up negative - but I still have Rheumatoid Arthritis. Mine began in my feet and ankles, hands and wrists, but it's now in knees, elbows, shoulders, hips, like you said - everywhere. That 'broken bones' feeling is very common. As stickywicket said, hope your GP has at least started you on NSAIDS such as Diclofenac or Ibuprofen 500. These are ok as a stop gap until you get an appointment with a consultant. I hope you don't have to wait too long, as it sounds as though the pain is really getting you down. Hopefully, once you get started on other treatments things should improve a little, but as dreamdaisy said, we know exactly what it is like to be in constant pain and can understand where you are coming from. Sending very gentle hugs and love.

Kath xx

crabby85 · 13. Jan 2014, 09:08

The gp has given me 'Rhumalgan 75mg' to help ease the pain but i cant say i notice much help from it. I only take 1 a day. It says to take only 1 up to twice a day...

A hot bath does help me, and a hot water bottle - about the only things that do, briefly! But i seem to be constantly on the move which doesnt help (I have a 1 year old just learning to walk, so not as much time as i'd like to sit & rest my aches!)

Im so grateful for all of your replies x

crabby85 · 13. Jan 2014, 09:24

kathleenT wrote:

Hi Crabby,

I am what is known as sero-negative, which means my rheumatoid factor came up negative - but I still have Rheumatoid Arthritis. Mine began in my feet and ankles, hands and wrists, but it's now in knees, elbows, shoulders, hips, like you said - everywhere. That 'broken bones' feeling is very common. As stickywicket said, hope your GP has at least started you on NSAIDS such as Diclofenac or Ibuprofen 500. These are ok as a stop gap until you get an appointment with a consultant. I hope you don't have to wait too long, as it sounds as though the pain is really getting you down. Hopefully, once you get started on other treatments things should improve a little, but as dreamdaisy said, we know exactly what it is like to be in constant pain and can understand where you are coming from. Sending very gentle hugs and love.

Kath xx

I feel like because my pains are so assorted they wont take me seriously, it sounds like my description is all over the place - dull aches, sharp shooting pains, 'broken bones' feeling - but im glad you say this is common. Part of me is worried they'd be expecting me to report one sort of fluid pain, but its different from one joint to the next

chez86 · 13. Jan 2014, 10:37

Hi crabby, I was too undiagnosed for a fair while. My pain started off feeling like I'd overdone it at the gym, then gradually got worse and worse to the point where I was bedridden. They treated me for viruses etc, and like u say, when u try to describe the symptoms people just become more confused as its not just in one place or the same pain in all areas.
I remember the 'broken bone' pain, its terrible. However they put me on Methotrexate and it is almost as though I don't have arthritis. Not everyone will find a treatment that works or works as well as, but hopefully you'll be given options and I hope something works ok for you.

dibdab · 13. Jan 2014, 10:42

Hi, sad you had to find us, but do feel free to unload- the folks here are caring and compassionate, and most of us live with a level of pain that will only be understood by someone else who endures it.

For me(I have rheumatoid arthritis that doesn't show in bloods) there are several kinds of pain-sometimes sharp as if some one is sticking a knife through my ankles-other times a relentless ache that fills my mind, other times just a dull ache or tenderness- it's a ridiculous disease, but at least once you get a diagnosis you can start getting some appropriate treatment.

Hope your appointment is soon and you start getting the right help.

Deb x

Boomer13 · 13. Jan 2014, 12:01

Hi crabby;

No need to feel alone anymore now you've found us!

There are many "flavors" and intensities of pain. Cold aching, hot, burning, stiffness pain, muscle pain.....So no, you are not alone in your experience of all the different ones in varied places.

I was undiagnosed for a very, very long time. I have a seronegative type, PsA. Definitely not fun, as DD says.

A pain diary was very helpful for me as I too could not talk to anyone about it and received the standard reply: "pain is pain". Ugh, no it's not. People without these conditions cannot perceive the possibilities pain can deliver to your. Hang in there, do what you need to do to maintain your mental health and know you have lots of support here. Talking with other sufferers will help and, hopefully, you will get some relief soon.

Best of luck with your rheumatology appointment.
xxAnna

Kitty · 13. Jan 2014, 12:46

Oh a hot bath sounds so good right now. Sadly, I no longer have one. They had to adapt my bathroom into a shower room because I couldn't get in the bath in spite of grab bars and my husband in there to help me.

Teapot · 13. Jan 2014, 12:58

Hello Crabby. I am sorry you are in pain. Like me I had pain everywhere but today I have seen a rehumatologist who was so helpful and I started on Methotrexate and Hydroxychloroquine with Folic Acid today. Obviously it is too early to know if this will work for me but I do urge you to listen to rheumatologist when you see them. Ask loads of questions, I did today. I hope you don't have to wait too long for your appointment but maybe your GP could push it through for you especially as you have a toddler as it must be hard for you. I have got so much out of this site over the last year so please keep looking on it as there are so many friends and ears it really really helps. Good luck.

Feels like the pain is everywhere...

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