Fibromyalgia you may not have it: I suffer from... - Pain Concern

Pain Concern

29,499 members9,865 posts

Fibromyalgia you may not have it


I suffer from Reflex Sympathetic dystrophy also know as Complex Regional pain Syndrome, this is the Worlds Most Painful incurable condition. It spreads in 77% of us. in 10% of us it goes full body that is all 4 limbs torso neck head eyes mouth and internal organs. In the rst of the world it is known as full body RSD/CRPS however in the UK to try and hide how many and how bad this is they change the name, this was told me by the specialist in aug 2011 but recently I have found outfrom other sufferers that the name they change it to is


19 Replies

That sounds horrible Kevscar. I don't know much about it though I am aware of the dystrophies. Is there no pain relief at all ?


There are known known drugs or combination of drugs that can do more than tempoarily reduce the pain levels. Most only work on approx 50% of usfferers and give upto 50% pain relief. Unfortunately 95% of the medical profession have never heard of it.

This is what we go through

MarsBarKid in reply to Hidden

Video non existent or has been made that way.

Kevscar, maybe you should add a warning that some of the images in the video may be distressing. I've worked in a hospital and seen many things, but found some of them very difficult to look at.

zanna in reply to zanna

Especially as children may be casually viewing

I also have CRPS (RSD) and Fibromyalgia in the past year or so i have been diagnosed with diabetes to add to the bag so i have had to go to various other places and all my doctor ever refers to is Fibromyalgia! I went to see my GP a couple of weeks ago due to severe lower back pain - I was in a bit of a pickle as i didnt know where to go for help. My GP said if anybody needs to know what is wrong to mention Fibromyalgia first as this is more widely known!!! Just shows you doesnt it?


How do I edit it to add warning.

Juleschat It's moreimportant that you mention CRPS and explain it. Theslightest trauma can cause it to spread, my first was caused by the use of a sensitivity pin 4in outside the affectedarea, made it spread from wrist to elbow, I am also on of the 7 - 8% whose wounds may ever heal, still have flying ant bites on my leg from22/7/2011.

Would you be willing to contact your MP mine is trying to get a debate in the house

Has any one seen the comments on the relationship between bacteria and back pain in the papers - treatment course of antibiotics found to be cure?

How many people with various painful symptoms have been tested for resident bacteria in tissues? Has anyone been tested for such before being put on regimes of painkillers?

Just thought I would ask?

There's a thread already about this John. Lots of discussion. I'm still awake because I've just been made a grandma! Life goes on, hurrah!!!

Fibromyalia is such a woolly diagnoses is it not, it covers a muiltude of other diagnose's that would show the world at large how many of us suffer severe and chronic pain in parts or whole body. There are diagnose's such as the one being discussed and their one's such as adhesive arachnoiditis caused by injections and surgery on the spine invading the spinal cord with just sterile water put in the wrong space ie the past dura and into the spinal nerves causes nerve clumping. But there are surely so many off us who are not diagnosed and those with the woolly diagnoses who so desperately want the correct facts, as without them when faced with telling not just friends and family whats wrong, but more importantly is if you are rushed into Hospital, as I was, they ask you why you are taking the many medications etc and because you lack a definate recognised condition, they are like startled rabbits in the headlights. They are so scared of the meds your on they don't want to give you what they would any other patient. So mostly they will send you home as fast as they can. Has any one else had this experience ???

congratulations Calceolaria- how lovely

Dog breeder i get this all the time you say ' i have fibromyalgia/cps etc etc and they say 'oh yes' then as the conversation goes on the questions they ask or the things they tell you to do makes it erfectly obvious they haven a clue what it is and what it entails


What is RSD/CRPS. Put in simple terms it is the most painful incurable condition known to man yet 95% of the medical profession have never heard of it. Can you imagine being in so much pain that you would cut your arm or your leg off yourself, hard to believe yet there are recorded cases of RSD suffers attempting and succeeding in doing this and if you look at the McGill Pain index at the end the Amputation is less painful than this condition

The Symptoms

There are FOUR Main Symptoms/Criteria for a diagnosis of CRPS:

• Constant chronic burning pain - (includes allodynia; extreme sensitivity to touch, sound, vibration, wind, etc.)

• Inflammation - this can affect the appearance of the skin, bruising and mottling for example.

• Spasms-in blood vessels and muscles of the extremities

• Insomnia/Emotional Disturbance (including limbic system changes such as short-term memory problems, concentration difficulties, and irritability)

Not all four symptoms are required for a diagnosis but most patients do have at least three out of the four at any one time. What makes this disease even more difficult for Drs to diagnose and treat is that patients can present with different symptoms at different times, even from one appointment to the next.

The CONSTANT PAIN can be described as burning pain as if a red hot poker were inserted into the affected area; as well as throbbing, aching stabbing, sharp, tingling, and/or crushing in the affected area (this is not always the site of the trauma). The affected area is usually hot or cold to the touch. The pain will be more severe than expected for the type of injury sustained. This is a hallmark of the disease. Allodynia is usually present as well (extreme sensitivity to touch). Something as simple as a light touch, clothing, sheets, even a breeze across the skin on the affected area can cause an extreme amount of pain to the patient. Pain can also be increased by sounds and vibrations, especially sharp sudden sounds and deep vibrations. This makes it increasingly difficult on the spouses, children, and other family members; as their softest touch can now cause pain instead of comfort. If the patient has not been properly diagnosed yet and these sensations not properly explained, these symptoms can cause extreme duress and confusion to all involved.

The INFLAMMATION is not always present. It can take various forms, the skin may appear mottled, become easily bruised, bleeding in the skin, small red dots, have a shiny, dry, red, and tight look to it. An increase in sweating usually occurs as well as swelling in and around the joints (shoulders, knees, wrists). In some patients a lack of sweating may also occur, and may even go back and forth between the two.

The SPASMS result in a feeling of coldness in the affected extremity as well as body fatigue, skin rashes, low-grade fever, swelling (edema), sores, dystonia, and tremors. The spasms can be confined to one area or be rolling in nature; moving up and down the leg, arm, or back.

The fourth part of this square is INSOMNIA and EMOTIONAL DISTURBANCE. CRPS affects the limbic system of the brain. Doctor Hooshang Hooshmand described it well; " The fact that the sympathetic sensory nerve fibers carrying the sympathetic pain and impulse up to the brain terminate in the part of the brain called "limbic system". This limbic (marginal) system which is positioned between the old brain (brainstem) and the new brain (cerebral hemispheres) is mainly located over the temporal and frontal lobes of the brain." This causes many problems that might not initially be linked to a disease like CRPS. Chief among them are Depression, Insomnia and short-term memory problems. CRPS can cause Depression, NOT the other way around.


There are many additional symptoms that can be part of CRPS besides the four main ones. These include but are not limited to;

- Changes in skin temperature (warmer or cooler compared to the healthy/opposite limb.

- changes in skin color (skin may appear red, dusky, covered with red dots, cyanotic, blotchy, or pale).

- hypersensitivity to touch, sound, vibration, wind, noise, temperature, barometric pressure changes, water temperature, etc.

- irritability.

- depression, fatigue, and/or insomnia.

- changes in hair/nail growth (nails can become brittle, cracked, or grooved - increased/decreased hair/nail growth).

- skin can become shiny, changes in sweating patterns - increase/decreases

- bone and muscle loss/changes, atrophy/weakness.

- swelling and stiffness in affected joints.

- throbbing, crushing, tingling, shooting, aching, stabbing, burning pain in the affected area.

- tremors (shakes).

- problems moving the affected extremity/body part.

- migraines/cluster headaches.

These symptoms can come and go and alternate over time, changing from month to month and year to year depending what stage the patient is in

This will spread in 77% of sufferers and in 10% will go full body, (all 4 limbs, neck, head, eyes and internal organs.

8% of sufferers may get wounds which never heal.


Thisismylife in reply to Hidden

Why will it not allow my to copy this post to print? Can anyone help me with this? Again Kevscar excellent explanation and Symptoms explained too a TEE...... I really want to print some of these but it will not let me highlight to copy & than paste or even highlight to print. Any help would be so GREATLY Appreciated..

Hidden in reply to Thisismylife

e-mail me on the address above and I can send them to you

all very true - a nasty nasty condition Kevin isnt it?

I just saw my Rheumatologist yesterday and you are 100% correct. I have suffered with CRPS for almost 12 years after a bad fall down some stairs at my job. People do NOT understand at all, what we go through every day. Your post "Please read my life with RSD/CRPS" was perfectly to the point. And I will be giving this out to all of my family and what friends I have left. But from my visit today with my Rheumatologist, he said that after have CRPS, you can develop Fibromyalgia, but as you stated it is basically just a sister family of CRPS. You of course have some other things that happen with Fibromyalgia, that I have not experienced with CRPS. So now as he put it we have double the trouble, 100x the pain and the work of finding what is going to work to get your pain down. And he explained to my husband that the pain I have is not like pain as if I had broke bones and took pain pills and the pain goes away, I am never out of pain, usually severe, some day better than others, but it is something nobody can even begin to understand unless they experience, so that was really helpful for my husband to truly understand a lot better. He has felt so helpless the last 8 months when after a Small Obstruction Surgery, all hell broke loose with my CRPS. I have also Insomnia (Severely) and Chronic Fatigue Syndrome. So thank you for your post and information. I am new to this site or any sites. As I thought why bother others with my issues. But A LOT of doctors who are not familiar with CRPS/RSD/Fibromyalgia make you feel like you are a Pain Med seeker, and CRAZY...

Thisismylife, you are so right! I regularly apply for repeat scripts from my GP for the various pain meds prescribed by the Pain clinic, to be told by the chemist that my GP has refused to supply one or other and to contact the surgery. When I phone, I am told that I have been on Tramadol/Duloxetine/Amitryptiline etc for too long and need to come off them. I patiently say that I have been prescribed them for pain relief (Fibro) and not for depression, to which they reply- oh that's different! Now if this is on my records, why do they not know this info before they give me more stress and a second trip to the chemist to pick up my prescription? It makes me soooo cross!

The more I read on this site, the more I see that Fibro/ CPRS is not a static diagnosis. In my own case, I have recently been diagnosed with IBS which I now understand can be a problem with Fibro as well. It's hard for even family members to understand just how hard it is for us to deal with these disabilities and cope with the pain. Xo

Hidden in reply to Kerryjess

Sadly it still sometimes gets called yuppie flu and so does ME/Cfs.Many people I have spoke to dont believe it exists! They ought to have a flare and see ig they still think the same x

I have had CRPS for 7 years. It mainly affects my upper body but has started affecting my lower limbs and internal organs. My nails and hair grow quickly when I have a flare up. The pain is worse than when I was in labour. I take each day as it comes and laugh at myself when I can't do things in the ordinary ways. RIP old life eh 😊

You may also like...