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Newbie in UK
13 Replies
pinkcarys - March 20

Hi, *waves shyly*

I'm 25 and have been having "joint problems" for about 3 years. It started two days after I had a laporoscopy for endometriosis. I woke up two days later and thought I had flu as my fingers and hands were stiff and sore. Since then it has accelerated and I have between no pain and extreme pain.

I have had two major flair ups where I have had pain which seems to radiate through each joint. It feels like someone has "hobbled" me the way the woman in Misery hobbles her captive. All my bones have been smashed and when I put weight on them its like the shard of bones are scraping against each other. It feels like knitting needles have been forced through my joints and up into the bones replacing the marrow.

And other times I'm perfectly ok. In fact I have had a period of 6 monhs where I've been perfectly ok. No pain whatsoever.

I've had enough blood tests to feed a greedy vampire and all they can tell me is that its fairly normal. My ESR was 22 which is a little high but nothing to make them want to investigate further.

I've been given steroids several times and they do seem to help - but whether its coincidence or what, I don't know. The other thing is that when I'm in pain my joints go puffy. Not swollen and not enough that you'd notice, but when I show my husband, or friends they cans see that its not quite right.

I'm seeing a rheum on 6th April and part of me thinks I couldn't care less what this is, just stop the pain, and the other part is desparate to be given a name (other than hyperchondria!). Two people have said separatelyt "Do you have fibro?" so I started looking and it looks like the pain you alldescribve is simalar to the pain I have. But I'm really confised by the puffiness I get and the fact that steroids seem to help.

The other thing I wanted to know is whetehr fibro can come and go like whatever it is I have does? As I said, it can give me pain so bad I can't support my own weight and other times it is like there's nothing wrong.

I've been given some walking sticks and have a wheelchair which I use when I'm in a real state as when its bad I can't even bear to rest my foot on the floor. I have had times when I've been on Oramorph every 20 minutes and have been screaming with pain in between top ups.

Please can anyone advise or help or suggest anything? I know you can't diagnose me or give medical advise but if you can give me some feedback I'd really appreciate it.



axxie - March 20

Hello Neubie frm UK, welcome to our forum.

Gees, reads like fibro, but wait to see what the rheumy will say.

I suppose they have tested you for everything under the sun and nothing is coming up.

I presume when you have are feeling fine, you have just started or finished a round of steroids, I know I had the same thing happen to me.

But it only fooled me into believing I was fine, but I merely was dancing with the dragons.

Navigate this site and it might help you understand your pain and you will be better prepared when you see the rheumy.

Good luck to you and come back and see us.

Now you need to identify the dragons they come in many forms, it may not be easy to identify them, because many are masters of disguise.


pinkcarys - March 20

Hi Axxie,

Thanks for your reply. Yes, all tests and no diagnosis. I know what it *isn't* but no one has said what it might be.

The two things I wonder about are whether the fact it seems to respond to steroids and the fact the joints get puffy mean it isn't fibro?

Do you relate to the absolute crippling pain where you can't weight bear at all? The pain is so intense that when I do I scream out. I've lost count of the times I've ended up sobbing on the floor.

If I were to be diagnosed with Fibro, what is the attitude likely to be? I know this is a US group so possibly different, but here things like ME still have the "its all in your mind, you need to get out more and join a gym". I'm worried that fibro will be treated simalarly. Are they likely to try to stop me using sticks or will they be the other way round and offer more help and support? I never know whether to push through the pain or to rest.

Sorry for the questions - I'm desparate at the moment!


axxie - March 22


Hello, and sorry for being late in replying. I hope you are feeling better today?

Myofascial pain is probably the most common cause of musculoskeletal pain, (reacts well to steroids and may have the puffiness), if there is a small change in the myofascia it can cause great stress to other parts of your body, so when you describe that when your foot hits the floor, you feel like screaming and it takes your breath away in pain, that is a myofacia pain.

So you may very well have fibromyalgia and chronic myofascial pain. Now the what you need to know is, how does it all connects and why me and what can I do, to get rid of it all.

What I can tell you, is, it's treatable but you will never get rid of it all. With many treatments available, it will be for you and your physician to decide your treatment plan.

Continue to inform yourself, so that when you see your rheumy, you will have some knowledge, it makes it easier for your physician to pronounce a diagnostic.

Once you have your diagnostic the questions is how do we treat you, there are many ways to help someone, what makes the difference it having patient, as not all treatment work for everyone. So knowledge is power, continue to inform yourself of what you have and describe your pain so that physician can get a better idea and do not be afraid to be your benefactor.

Explore the treatment options, there are many drugs out there that may help you, even physical activity helps you.

I would not ditch your gym membership just yet, you may have to resort to different kind of excercise where it's more gentle on you, like yoga.

As for your stick, if you think one day you need it because your feet don't seem to stick to the ground then use it, and on those beautiful days when you are feeling great, leave the stick at the door.

This forum is open to everyone in every country, we have people from the UK, others are from the US, there people like me who come from Canada and others who come from another country. What is nice, is we have a place to hang out and ask questions and learn from it.

Good luck to you and continue to seek knowledge.


pinkcarys - March 22

Hi Axxie,

Thanks again for replying. It's been really useful and comforting to know I have somewhere to turn. I'm not sure if I do have fibro or not, but at least people here understand the pain and frustration I'm having.

I've looked into the mysofacial thing and have to say I had a lightbulb moment. It certainly looks like a contender. I have got to the point where I don't care what it is, I just want to know.

Thanks again for the reply. It really helps.


axxie - March 23

Hello again, a few questions that I would like to answer, is how is the doctor going to react? I can tell you by my one experience.

How can someone assess your pain, you are the only one, not even your physician can assess your pain, and if disagree, you should not suffer because of that, professional must provide relief & hope. If you suffer from chronic pain, you should not be denied adequate pain control because of your fear that you will become addicted. Just remember that relief of the chronic pain is not asking for the impossible.

Describing chronic pain to your doctor, you must communicate what the pain means to you in the context of your life. How is it changing your life? How is it interfering with your functioning? What do you want to do that you can't do because of the pain? Bring your medical team into your frame of reference. The words you choose are important because they provide your doctor with clues, as to what your pain is like.
Of course, you must do what you can to minimize yr pain by being good to yr body, avoiding overwork,&refusing to perform activities when you are exhausted or in pain. Often, however, such preventive measures aren't enough. There are many words to describing pain. Words such as pulsing, throbbing, pounding, shooting, prickling, stabbing, lancing, electrical, sharp, pinching, pressing, gnawing, craping, crushing, tugging, wrenching, hot, cruel, vicious, killing, blinding, intense, unbearable, spreading, radiating, piercing, tearing, agonizing, & torturing also describe different types of intense pain. Tingling, itchy, stinging, dull, sore, aching, heavy, tender, tiring, exhausting, sickening, suffocating, frightful, annoying, troublesome, miserable, tight, rigid, numb, squeezing, cool, cold, icy, & nagging are others words to describe different kinds of pain more pricisely. Then there is also the kind of pain that brings on other symptoms such as vomiting, shaking, distractability, &/or an inability to concentrate. Do you have suicide thinking, this has to be taken very seriously. Don't be afraid to speak up, as the doctor can help you. You will not be looked upon a freak, because you mentioned suicide thoughts, what you are describing to your doctor is a symptom, not a disease. The same goes if you have a lack of sleep, which as you know is a vital role in memory. The quality of our sleep has an impact on your life. Sleep deprivation affects, your way to thinking clearly & how you feel.

When I have more, I'll write more, but for now I think it's a good start. Have a good day & take one day at a time. Just remember, to be good to your body and treat it with respect, this may mean changing your eating habits, your emotional mind, and also how you perceive yourself.
Good Luck


ptalana - March 23

Hi Carys, I can totally relate to the mind numbing pain that is related to FMS. I live in Canada and have just been diagnosed with FMS. I had a severe accident at work three years ago which has left me with not only FMS, a spinal injury, nerve damage, disc degeneration, and scoliosis!!! I am no longer able to walk without any asisstance a walker at home, wheelchair if I leave the house. I spend the better part of every day flat on my back, I have finally got an appointment with a physiatrist on April 30th. I'm hoping with the right medications I can resume some of the quality of life that I had before my accident!!! Good luck to you, stay strong, and don't forget you are not alone!!!
God Bless, Patty


axxie - March 24

Hello Patti, although I had an accident also, mine has not been as drastic. I feel I have nothing compare to you, and I feel for you, it's no fun when your life as been drastically changed overnight. I hope you are keeping strong and that you are getting all the care you need. I am also from Canada, I live in the Ontario province and find that the government has done a great job to allocate health-care monies to other infrastructure (like their pockets). I now found myself paying 3K in eye surgeries that Ontario used to provide and don't anymore.
Keep strong Patti and may you smile at the little things, it makes it all so worthwhile.



awesomebikerbabe - April 5

hiya pink .. am also in the uk ..
theyre pretty thick over here with fibro ..
ive had docs tell me when mine first started ... you have flu .. go home and go to bed .
ad with my allergies after being rushed to hull royal in an ambulance .. accused of having a panic attack .. and they sent me home . only for me to be returned an hour later unconscious in an ambulance ide got home . and passed out while having a pee .. my eldest son found me and called an amubulance .. my system shut down and i was in a coma of unknown cause for 6 weeks .. i did get an apology from the doc who sent me home . ]
ive looked on here and am going to try the stuff the recommend next week ..

all you will get from the docs are painkillers and antidepressants that turn you into a vegetable


axxie - April 6

I think those doctors are everywhere, the problem is we keep running into them. I remember having a bad reaction to some antibiotic, and my hubby rushed me to the Er, anyway, as I was trying to breath and my lips were blue and I was seeing stars from depletion of oxygen, the doctor looks at me and says tell me what brings you to the Er, my hubby pipes in and says, can't you see she can't breath, why don't you treat her instead of asking such stupid questions. Anyhow it was the nurse who helped me more then the doctor. After I was discharged, I was not given a referral, just I treated you, now goodbye. I was to weak to do anything, but if I ever have the same doctor, and I'm able to talk, I'll have a few choice words to give him.


axxie - April 6

Drugs that can help you,

Cymbalta in Europe marketed under Yentreve.

For the management of fibromyalgia is another important step in the efforts to ensure that people with fibromyalgia will have the availability of effective medications to help reduce the chronic, widespread pain of this life-altering disorder," , [taking Cymbalta] increases the activity of two naturally occurring substances called serotonin and norepinephrine. These substances aid communication in many areas of the brain and spinal cord ... [and research] suggests that these substances are part of the body's natural pain-suppressing system."
"All pain travels through the body and into the brain,". "In order for someone to experience pain, it's perceived by the brain. Cymbalta is a medication that works [to stop the pain's perception]."

Cymbalta is currently approved to treat four disorders in the U.S. and a fifth -- stress urinary incontinence -- in Europe (marketed under the name Yentreve).


ssnedds - April 23

i have recently been diagosed with fibro, i 2 had good and bad days, more bad prob- but it came and went!! i was diagnosed and put on amitriptyline 10mg and pain relief through the day, only been on a few days so cant comment. i constantly felt as if i had bad dose of flu and even felt as if i was acting it, everyone got that they would roll their eyes if i woke up feeling rubbish "you were ok last night" was a favourite!!! i had blood tests for over 4 years and everything was checked, a new gp finally listened to me after i broke down in tears after getting more clear blood tests back, felt as if it was all in my head!!!
persivere with the gp and make them listen, try and see the same gp all the time, they then get to know whats normal for you and whats not!!
(i amawaiting a referral for neurologist too)


ssnedds - April 23

ps: meant to say that i am in uk too - glasgow.


lizbet - April 23

Hi everyone. Im recently new to this site and am also from the UK. Ive had fibro for 3 years and am really struggling with the pain and stiffness. The widespread pain is just too much to cope with. I take co-codamol 30/500 and was taking amitriptilyn at night but found it makes me dizzy and also gives me very bad dreams,so I stopped taking it. My doctor is very sympathetic but hasnt really given me any other options on pain relief. I would also advise anyone to keep seeing the same doctor and keep on trying to get through
to them regarding just how disabling this illness
is to you. I dont know, maybe one day they'll listen and do something to help us. All the best to you all.x



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