So 1999 I injured myself, seemed like minor injury on the day ,but in the days following I was experiencing severe pain throughout my body, this was despite it being a shoulder injury. I progressed to feeling like my arms , legs joints etc were all broken , I was in tears with the worst pain, then when I tried to lay down I couldn't feel my legs, I couldnt bare anything touching me even a small cover or duvet felt like it was crushing me.
So obviously I attended the doctor, I was given pain killers, and over the next four years had differing opinions but no diagnosis. Most infuriating being continually told I was irrational and things like it was in my head.
I tried numerous doctors both male and female with same results. It felt like one doctor thought it was in my head and no one would go against this opinion.
2003 I seen a doctor who spotted my muscle twisted arm and blue colour of my hand. He immediately thought CRPS. I was then sent to
Hospital ,diagnostic department. Where within a day this was confirmed as full body crps.
In between all this I had seen private doctors, had surgery etc etc ,which probably shouldn't have happened.
A rough count around 20 different G.Ps, 10 specialists, scans test stays etc.
Outcome is that after 4 years it's to late to stop crps spreading and nothing but pain relief.
If you type in or know CRPS it easy to see my anger.Given the symptoms are easy to see.
Not one GP Listened to the symptoms. All to arrogant to listen.
So i struggle through life self managing my condition. Until 2015, due to crps sometimes my legs don't do as expected so this resulted in a fall on my stairs. I landed heavily on my side and was badly bruised.
So trip to the docs, no examination just a quick look , and told just bruising given pain killers.
In agony back a week later it was muscular would take time to heal. Still getting worse I had 3rd and 4th visits to different gps. So 6 weeks in and having told everyone things were getting worse and having the usual , it's your condition making it worse. The 5th gp finally examined me, booked in for an x-ray.
One week later before the x-ray I collapsed and was blue lighted to Hospital, doc had a look and in 30seconds said it's muscular, prescribing meds.
My partner went mad, and he agreed an x-ray.
It so happened the bottom of my lung had collapsed.
Over the next 2 years I had physio pain clinic lignacane infusions etc etc still pain not better in my ribs . Final got a scan , revealing 2 fractured ribs .not healed as the should have.
So i wrote the post because I don't believe that 95 percent of the doctors I have seen ,actually listened to me, my symptoms etc.
What you get is a cop out, that CRPS is difficult to diagnose, I disagree.
Cop out to blame other problems on CRPS
SO hopefully this clears up the reasons for the post.
Sorry for the length but I'm going on 20years of this now. So if as me are things improving .
I have to laugh.
Cheers all.
Dave
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Davek723
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This is chiropractor and Alexander Technique territory. Forces can manifest on the shoulder and be transmitted to the spine and spinal ligaments. Bruise on shoulder heals. Damage to spinal surrounding tissue never looked at.
CRPS used to be treated by physiotherapists by massage. This skill is now virtually non existent in that speciality.
See a sports therapist. They should know the massage skills needed.
Hi like you I had to wait over 4yrs to be believed and now 7yrs later my whole body is suffering, I survive on morphine and a cocktail of drugs, I did see a wonderful consultant at the pain clinic who diagnosed me and I cried, as I was beginning to think it was all in my head. over the years I have developed hear, lung and blood conditions, ( no relation to CRPS) I am 63 and had to give up my job as a nurse specialist and teacher, at first it took a while for me to come to terms with it, it does impact on your life, this I will not deny, but given the choice now between getting my old job back and no pain, I would choose what I do now, I learnt that I can paint and am very creative, I design and make dolls house miniatures and have a little work room and I can switch off and be distracted from my conditions, yes drugs help, but so does state of mind, when the pain gets really bad I sit and colour, even that I enjoy, the only thing I do wish is that I was fitter so I could play and do things with my grand children.
I now have a very painful deformed knee, and they tried to give me physio, after one session I will not have anymore, he did not believe me when I said my pain is about 8 and it has triggered my pain syndrome to react and give me more pain, you get to see that look in their eyes, got told after 3 mths of physio I will be pain free, so its back to GP to try and get to see orthopaedic consultant, I do find that anything you develop post CRPS it takes longer to get treated or diagnosed as that are so quick to blame the condition.
I hope that one day people will understand the pain syndrome and have an understanding at what we go through every day, take care and gentle hugs x
Hi there thanks for your reply, your story sounds very like mine.
Like you I was in tears when finally diagnoses, tears of relief really. Gave me something to deal with.
Im not very artistic though. Lol. So i actually do voluntary work as a tutor for people with chronic pain , and the associated problems , stress anxiety etc etc. Its so rewarding and a massive distraction . Im so careful not to be consumed by it , and do it when Im able .
Its my distraction , Im on the verge of setting up to do this privately, as there are so many people who are so anxious about group situation.
I also have the same issues with grand kids , it would be great to do more, some days I can manage to pick them up , others I can't.
I've found kids really understand though, sometimes better than adults lol. So i just explain that Im a bit poorly today so that they don't jump all over me , you should try this And you will find the gentle hugs you get surprising and lovely.
Thank you for your lovely message of hope and posativitey.
I feel your pain... it's the worst feeling when you know something is wrong, a bunch of doctors scratch their heads or lower their voices and ask, 'how is your home life,' and then you finally get a test and voila! transverse myelitis! avascular hip necrosis! (in my case). these doctors. smh good for you that you kept fighting.
Hi Dave, I certainly feel your pain... I just finished a decade having to progress thru the same
hoops that you encountered.. I do have a very knowledgable Pain Dr that is my only saving grace. My frustrations are with the people that do not need Pain meds, but get them anyway. Just creates an enviroment where everyone that is prescribed Opiates,, is frowned upon as an addict, just looking for more Meds. My RSDS(CRPS) started in my foot after a wreck and flayed Ribs and reconstructed RT. leg (Pins, plates,screws and new Hip) Until i stood on it the day after surgery and the Hip holding screws all pulled out. 10 weeks on my back and another Hip surgery. Dr. didnt even look at the Cat Scan before1st surgery or he would have seen that i had no Acetabuline Socket. It was shattered in the wreck..
sorry for rambling
I do sympathize and wish I had just cut the leg off .. Then no CRPS?
Hi cheers for the reply. I totally agree, if i had know CRPS was around the corner, I would have gone down the amputation route, would have adapted quickly to one arm, over 20 plus years of living with pain all over my body.
The problem is when you tell people this the either think you are just plain mad, lying or mentally ill. To be honest I wish no one a life of CRPS but wish people could experience a few days of the pain , maybe not be so quick to judge.
I had a conversation with a woman who said I didn't know what pain was , try giving birth.
Yes she did really say that.
I pointed out the latest pain scale, and it does show giving birth as up there near the top, still less than CRPS tho.
I followed my destruction of her argument by simply asking how long she was in labour, 12 hours apparently. So i asked how much she really suffered, "" the pain is unimaginable".
So I asked how she would cope with this level of pain on a continual basis.
We have now become friends and i have managed to alter her thought on chronic pain.
Wow what a whirlwind of experience you went through huh I understand that this form is in the UK and I reply from the United States it is unfathomable to me that this happens worldwide I have seen many doctors due to my low back issues and have always been dismissed in always kind of like gaslit going through medical records where they have lied and said that I am doing better by certain procedures that they have done which have been lies all the way through so right now I am currently going through all of my medical records and making sure that everything is accurate I am actually looking into a medical malpractice claim due to negligence I believe that people need to start being held accountable for what they are doing doctors are very arrogant they don't listen and they think they know everything that is been my luck too and at this point I'm so frustrated with the way that people with chronic pain are treated that I want to make some kind of impact I'm not in it for monetary reasons but I definitely want to let them know that enough is enough it's unjust it's not right and it's not fair when we go in and share with them our symptoms we are telling them how are we feel we're the ones that know our body it's so hard to describe to somebody who's not in pain who can freely move around every day get out of bed take a shower eat normally and they're not depressed or anything they don't understand a word we're saying it's a foreign language to them but them as doctors are there to treat the patient and their symptoms and make sure that they are taken care of and I feel that most doctors are very dismissive and degrading I really wish that the healthcare would change for the better I pray that one day we will all be able to have pain relief without the use of opioid medications or any side effects it seems like no matter what we do something will always be wrong it sucks I wish you all the best thank you for your post I really appreciate it because at some point I really felt like I was all alone and that my doctor that I was seeing for a while was just saying that it was in my head so I suffered for a long time thinking maybe there really isn't something wrong with me even though I deep down inside I knew there was and lo and behold seven or eight months later I had to have a fusion in my back it was so bad I could not work I could barely stand up and I could barely sleep so like I said self-advocating for ourselves are so important never settle for the answer that they give you unless you are 100% on the same page with them more people need to stand up for themselves the Healthcare System is built to make money keep us sick and not fix the problems so we need to push for change I wish you all the best I love this post and I appreciate everybody's participation I love this form so much love and light to everybody
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