Hello I am a mid 50 year old woman living with RSD now known as CRPS for 5 years and there seems to be no end to it. My complaint started with a twisted ankle and subsequent fluid build up. Next, after 3 steroid injections - those needles are craaazy! - I underwent surgery and that is when I started to experience pain with fire attached to it. I have never screamed so much over anything not even at the birth of my son! I had the added burden of "proving" it was not just in my mind and that I was in pain, unbearable pain.
Life took on a different meaning from 3 years on crutches to 2 years wheelchair followed with sensitivity therapy and now walking with a cane. Most people look at me as though I am a fraud as on the surface I look OK. But they cannot know the extreme pain and extreme changes with weather and emotion that I endure. I sometimes go without food because I cannot prepare anything.
Standing for any length of time varies with me sometimes I can make half hour and others no more than five minutes and I am in discomfort. I have tried several times to get disability assistance and have been rejected on account of whatever decision they decided I did not fit into.
My RSD - Yeah, I had to learn to own it, started in my right ankle and foot and spread through to my left ankle and foot both hands and in particular my fingers. My lower back and my left shoulder and neck into the lower left mandible. I have been searching for help -support of any kind or sort to help me fight the behemoth social security services. I sometimes need help to take care of my personal cleanliness and getting about not seemingly spending my life in my room. Oh I am in shared accommodation and I have stairs to manage day in and out. It is a miserable existence and I truly believe I am depressed.
My GP said they try to assist their patients but to date I have not been referred to a pain management clinic and yet I am on morphine. I really don't think this works all the time as I often have to resort to oramorph along with regular paracetamol - much more than I should take but who cares? Who cares when pain is your constant?
Please someone help me to understand how you cope with your RSD/CRPS. Do you get aid? do you have a carer? What about shopping do you have someone to help you and to prepare meals? Do you have special equipment for getting in and out of the bath as well as bed? I sometimes get so dizzy that I fall right over from a standing position. I have lots of bruises to prove it.
I would really like to hear back from anyone as I feel so alone and lost I think sometimes I just want to chop off my feet to get rid of the pain. Do you think I am strange thinking that way? Well constant pain will do that to you....all the time. It even hurts when I draw my breath!
I also would like to know about accommodation, I do not own my own home and I am living in a shared house - a regular house as the Council did not have a suitable place for me at the time I had to move I settled for something private. It also was very difficult to find someone private to accept a disabled person into their home who is on benefits. There are so many ifs and buts that I feel there is a real need for accommodation for people like myself. I would love the opportunity to start up something but it takes time and depends on how I am feeling from one day to the next as to whether I can work at anything with any degree of success.
I know I have gone on a lot but please forgive me as I need help and feel that a support group is more likely to extend help in terms of their own experiences. I look forward to hearing back from you.
JannettG
Written by
JannettG
To view profiles and participate in discussions please or .
Hi Unfortunately your story is only too common for us, 95% of the medical profession have never heard of RSD/CRPS so many go for years having it inferred they are malingers, twice for me or being told it's all in their heads, twice again. Have you contacted your local occupational therapy unit. They got a few things done for me including a grant to have a shower cabin put in. I would either appeal or re=apply for DLA but you must remember to only give details of the worst affects. Sometimes you can stand for half an hour sometimes only 5 mins so you put only 5. You must only give the worst possible scenario otherwise they will go with the best case and ignore the worst. If everything is so bad the council might help you sort out alternative accommodation but again you have to give the worst case scenario, explain to them how big a problem the stairs are for you and that a fall could lead to your condition spreading and/or becoming even more crippling. I always use the word cripple because it makes them straighten up and listen more than disabled.
Hi, no I have not gotten in touch with the Physio Therapy team and I understand that my GP has to refer me to their services. Quite honestly where I live I think my landlady would have a cow if I altered her bathroom so I will seek help from the council with specific details on crippling effects of the disease and the need for a more suitable accommodation.
I am also applying for PIP - personal independence payment, have you heard of it? Are you receiving DLA? If so please would you let me know as then I feel vindicated in getting the allowance as others like me can be shown to have received the payment. Without this information I am reluctant to apply for the payment - 3rd attempt and 2 appeals already encountered.
Thanks again for answering and I look forward to hearing from you soon.
Not Physio but occupational they are the ones who can arrange grants and help. Yes I get DLA originally low rate carers but after it went to both legs I applied for mobility, got turned down but appealed and won
It must be sooo dreadful for you. I don't have the illness but one thing that comes to my mind is about your housing situation. A friend of mine has a husband who has medical problems (nothing near as bad as yours) and they were housed by a housing association...do look into it. they had been renting privately but put their name on the housing association list, with all the ailments listed, and it took just months for them to be rehoused. Worth looking into!!! Take care
That is a great idea, thank you for the suggestion. I will check if there are any housing associations in Northampton and make an application. Thanks again for your input. I agree it is worth looking into
First take a breath, now here is a list of things you need to write down and take to your gp, do it calmly (I know it is difficult to stay calm when life seems so desperate).
1. A day diary, including falls, pain levels, physical changes in your effected limbs, depression.
2. A list of your current medication.
3.A request to see an Occupational Therapist preferably a home visit. (they can help you organise your living space so it is safe, loan equipment, and write reports which you can use if you need to be rehoused or claim PiP)
4. A request to see a Pain clinic specialist. (Pain Clinic will give you access to far more than pain meds including Physio, counselling and support)
Book a double appointment when you book to see your gp so that you have the time to sit down and talk through your management plan. Take control and ask your gp to back you. If he refuses all of your list ask why and if no good reason change gp. If he agrees for you to see either pain clinic or organise a visit from Occupational Therapist accept it as one will lead to the other anyway.
I have never met any healthcare professional within pain clinic or at the hospital who has never heard of crps all have been well versed.
A quick add, take someone who knows you well with you, gp's often react better when you have someone with you to confirm what you are saying. Pathetic I know but they do.
Your ideas are sterling. I have thought of doing this some time ago but almost feel like I am a burden. I will do it it however as this breakout pain is not trying to go away anytime soon. I will ask for some neighbourly help to write my diary.
Bless you very much for taking the time to write to me.
Hi, I have CRPS which started in my left ankle 3 years ago. Although my right ankle is not fully there yet, the pain and swelling has started there too and I really do understand the daily struggle just to stand up for 5 more mins.
I also have fibromyalgia, chronic chest pain, epilepsy, pernicious Anaemia and now hyponatraemia (low sodium). I have just been referred to a pain consultant and I am hoping for some more pain relief.
I am currently living in a hostel full of alcoholic s & drug addicts. This is because it was the only place which has a room for a disabled person. Been here 6 months and it's not pleasant!
Definitely apply for pip. I get low rate care & high rate mobility DLA (make sure you put you can walk 0 metres without severe pain, as it's true). I need to add my other issues onto my claim but I'm scared they'll take it off me.
My godsend is my mobility scooter. Yes I'm 38, but it gets me around and street cred doesn't matter. I bought it in December last year, as i didn't know I could get help to buy one. It is a must for you to look into, as it can change your life!
Please message me any time and sending you big fluffy hugs.
Hi Jayne, big fluffy hugs back to you. Not sure that I can do this for long but definitely have the intent deep from my heart. Oh you poor thing having to suffer such terror on a daily basis.
I have thought about the scooter but I do not have the money to buy one and I would love to have read this message before sending my pip form in. I stated I had trouble walking within 20 metres. I am in pain and have to find somewhere to sit except there is so little public seating and the ones provided are too low. I have sent the form in and awaiting a result.
If I do not get it then I am going to appeal with the information I have been given here it seems that there is enough for me to find supportive info to take along with me.
Lots to say but will write again when not in so much discomfort in fingers and hands.
Hi, sorry to hear of all your problems. I don' have the same illness but am suffering from chronic arthritis etc, I contacted the social service dept of my local council and have to admit the first occupational therapist who came to see me, promised a lot and did nothing. After 18months I tried again and the young lady who saw me was brilliant. They have installed a bath lift and grab rails . Today they are putting in a concrete ramp for wheelchair access for the future and to help me get my walker into the front door. It is all really helping me to cope with the mobility difficulties.
I have also tried for DLA and after many months of waiting for the assessment, I failed . My OT has advised I re apply.
Hope this will encourage you to try and speak to social. I believe Age UK are also very helpful. One thing I have learnt is that unless I ask for help they will not know that I need any.
All the best in the future. Please make a point of chatting here as we all are living with pain and know where you are coming from. Ann xx
Thanks Ann and I am sorry for your pain but happy to learn of your current list of help.
Hi jannettg I have CRPS it was so bad after 22 months I had my left arm amputated above the elbow I also have it in my right hand and arm, I have been told by my pain specialist that they will not amputate my other arm and that I can not have any operations on my legs because I have a 99.9% off getting CRPS. You need to keep on to the council that's what I did and in the end I got the right place also try the housing association they may be able to help u
Thanks Yogibe. I am surprised that your doctors amputated. Even when I wanted it, I was told that that would not make the situation better as there is also phantom pain.
I am sorry for all of us going through pain day in and out. What did we do to deserve this?
Yes I do have the phantom limb pain and I still have the CRPS in my stump but it's not as bad as before, I told the doctor if he did not amputate I would cut it off my self but now I have CRPS is in my right hand and in my arm but my pain specialist will not amputate I dont know how long I will have the use of my hand, I have said once my hand go's I will take my own life because my life will be over
Yogibe, how sad, please, please do not take your life. I hope that you can get comfort from other people in pain. We understand your anguish. I had a friend from childhood, more my younger sister's friend but my peer. She developed breast cancer and was so devastated she suffered ptsd and ran away from her home twice and was found living on the streets. Never far from her home as she had young children, but that was not enough to stop her taking her life. What a pity. She could not be consoled no matter what. In the end you could say she threw herself away! quite literally, as she was found nearby in a hedge bush. She could see her kids but they could not see her. In the dead of winter she went to sleep alone, wet and cold in the hedges to be found by a dog walker and his grandson. Both of whom had to undergo counselling. How terrible and tragic. So my dear please consider your situation and hold out you never know maybe there is a cure right round the corner.
Hi jannettg, you have got to understand that when I loose the use off my right hand and arm I would not be able to do anything for my self I would just be put in a home in a corner or in front of a window just to watch the world go bye. I am very sorry for u friend she would have had a normal life if she had the treatment, there is no treatment to help only meds to help with the pain, I will loose the use of my arm but they will not amputate. So what is left for me nothing I cannot live like that having a nurse feeding, washing, and dressing me just to be put on a seat and watch my life go bye that's not for me
Hi jannettg I have tried a lot off things and I have talk to, I'm not going to do things yet I will injoy life till I loose the arm that in a year or two
CRPS is horrible and coming to this site where there are many sufferers can be a tonic even if it just reminds you that you are not the only one having a tough time. I only found this site myself about a month ago and wrote a short post and found it uplifting that so many people took the time to reply and all the responses were kind and supportive.
I have had a horrid day today coming on top of a pretty wretched couple of weeks but two of my neighbours were so kind to me and dropped everything to help me out today and to them I suspect they think it was just a quick good deed but it meant so much to me and so in my very limited way I just wanted to try to do a good deed back and let you know that you can find support on this forum. I am sorry I do not know anything about housing or care benefits but I do have CRPS from my toes to half way up my leg and can empathise completely with the pain and frustration, tiredness and the isolation and feelings of helplessness, financial worries etc etc
I know that you have already received several replies (all probably far more helpful than mine) but if you have not worked out already that Kevcar is very knowledgable on the disease then I suggest you follow his posts. I have learnt several things from him over the last few weeks and by following his and others' suggested links. One simple tip which I would shout from the rooftops if I could climb up one is to take a daily vitamin C supplement, all the time if you want to but for at least 60 days after a knock. If you are anything like me and very unsteady on your feet now knocks are a frequent part of my life. On YouTube I have listened to two different lectures by American CRPS specialists and one of them talks a lot about taking a vitamin C supplement. Apparently in America it is now standard advice for anyone going to an emergency room with a broken bone or having suffered a bad knock and it has been proven that taking the supplement not only reduces healing time but significantly reduces the percentage of people that go on to develop CRPS and if you already have CRPS the american doctor recommended that you take the supplement as he believed it can help to prevent the disease from taking grip in another limb where, as you know if you have CRPS in your foot but accidentally catch your finger in a door you are greatly at risk of the disease moving to your finger. As the doctor being filmed presenting at a conference to other health professional says, vitamin C is readily available, relatively cheap and can do you no harm and he recommends that all CRPS sufferers take it. No-one here has ever told me to take Vit C but I wish the A&E doctor 11 months ago when I was hit by a car had mentioned it!
Hello Jo, I wish you luck with your CRPS and hope that you get better sooner than later. Thank you so much for taking the time to write to me and sharing such valuable information. No, I did not know about the vit C and I certainly will try and include one in my routine although I do take a multi-vit each day.
As to Kevcar he was the first to respond to me and he did come across as very knowledgeable on the topic. I have already taken his advice and will be seeking an assessment at my current home. I rent and therefore I need to move to somewhere more accommodating to my condition.
Jo, I also thank you for letting me know about the knocks and how they can lead to a spread of the disease. WOW! I did not know that at all. I have had some very strange things happen to me and now I feel pain in my face and lower jaw as well as a constant numbness in my lower mandible. A recent hospital visit showed a shadow which was investigated under general anesthetics (regular anesthetics at the dentist does not work on me) and came back with a negative result for ulcer. I have tried telling them that I have CRPS in the area but they wont listen as it is so far away from where I have my original injury. Maybe I should let them know that I was attacked and kicked in the face and head which, going by your reasoning, would account for the spread in the CRPS. I am not sure about my fingers and arms.. unless they are results from my fending off the attacker best I could.
Well Jo, I certainly will come back again and again to this forum but I am now experiencing a horrible pain breakout and with my medications I am sleeping when I should be awake and awake when I should be asleep. Its a real topsy turvy world at worse for me and I wish there was a way out of this condition forthwith!
thank you for taking the time to write to me. I pray you have many great days.
Jannett
Unfortunately this spreads in 77% of us, I can give you a paper from John Hopkins which states this, In 10% it goes full body, all 4 limbs torso neck scalp eyes mouth and internal organs. 7 - 8% of us get wounds which may never heal. I am one, flying ant bites which happened on 22/7/11 didn't completely heal until Jan this year. Can also give you the paper on that plus hospital protocols used in American Hospitals which actually know about RSD/CRPS
Kevcar I would really appreciate your help in providing/sharing the information you have. I, unfortunately have pain in my 4 limbs and mouth. Never thought of the eyes but do have pain in them which I explained away with other reasons. WOW what a terrible thing to happen to anyone. It is even hard to type.
Reflex Sympathetic Dystrophy(RSD) also known as
Complex Regional Pain Syndrome (CRPS) is a chronic
condition characterized by severe burning pain, pathological
changes in bone and skin, excessive sweating,
tissue swelling and extreme sensitivity to touch. People
afflicted with RSD/CRPS are extraordinarily sensitive to
certain stimuli, such as touch, movement, and injections.
Patient Tips
1. Bring a written copy of your medication regime. It
is important to verify whether your medication regime
can be taken care of solely through use of the hospital's
pharmacy. Some medications may not be part of the
hospital's formulary.
2. Avoid having ice applied to the RSD-affected limb
3. Instruct all hospital staff to always ask before touching
you!
4. Request that the surgery protocols be adjusted so
that the pre-op shave be done after anesthesia
(catheter is in place for epidural or whatever). It feels
like a lawnmower has been run over your legs when
they shave without anesthesia.
Patient Room
1. Whenever possible patient should be in a quiet part
of the hospital
2. In a semi-private room, patient should be in the second
bed to avoid inadvertent bumping
3. A Zone-Air bed should be used (adjust mattress pressure
to patient preference)
4. Heat and air conditioning should be well regulated
5. Standing orders should be issued for patients to have
warm blankets
6. Foot Cradle to hold bed linens off body area (will
diminish tactile stimuli)
7. Frequent linen changes may be necessary due to
hyperhidrosis (increased sweating).
8. Allow family members to bring in clean sheet and pillowcases
for patient. Hospital sheets are not soft and
can irritate the skin.
9. Place a sign above bed designating affected limb
Procedures
1. Perform a phlebotomy on unaffected limb only
2. Use Pediatric needles (any trauma can cause the
spread of RSD to a new site)
3. Warm Alcohol or Betadine wipes with warm running
water on outside of package before opening package
(these wipes can be very cold to the patient)
4. If PICA site is available, see if blood can be obtained
from PIC instead of using vena puncture technique.
Blood Pressure and Pulse Rate
1. Use cuff on unaffected limb only
2. Use thigh cuff if both upper extremities are affected
Transport
1. Ask what kind of help the patient needs when transferring
to a stretcher or wheelchair (simply touching
arms or legs may cause hyperalgesia)
2. Use extreme care over bumps, such as elevator doorways
Feeding
1. Be careful not to touch patient extremities with bedside
Thanks for sharing Kevscar....I know only too well about the healing or lack thereof. As in my case follow-up surgery was considered when the initial wound site would not heal. Luckily for me I was diagnosed with RSD before the intervention. I also have issues with my teeth following extraction. It seems that RSD has spread across the lower area of my mouth and has shown itself as a dark patch resembling that of an ulcer. My dentist won't accept my work for it. However, she is in no doubt that the dosages of her numbing medication does not work on me at all. I therefore have to have general anaesthetics followed invariably by 3 series of antibiotics and a minimum 3 months recovery for the simplest oral surgery.
Thanks again Kevscar for sharing.
Wounds that Won’t Heal
By Anita L, Davis, PT, MSM, CA-AAPM, CEAS
Life is full of its bumps and bruises. Who among us does not have a knee or elbow scar from a fall off a bike? I remember a phase where I must have fallen every few weeks running on a sidewalk, with a scarred up knee to show for it.
The healing response from these sorts of injuries usually occurs in a predictable sequence. First, the tissues respond with inflammation that can last anywhere from 7 to 14 days. The increased circulation caused by inflammation brings in a flood of specialized cells to clear out wound debris. The next phase, fibroplasia, lasts for 7 to 10 days, and may overlap part of the inflammatory response. Fibroplasia is critical for establishing the presence of cells that begin to produce the foundation for new tissues. The final phase, remodeling, can last for weeks as tissues mature and regain their strength.1
This is not the case when complex regional pain syndrome (CRPS) is involved, since nerves misfire and normal healing processes that are necessary do not occur. Although one study of 1,006 patients found that less than 7% of people with CRPS are affected by chronic open wounds2, this small percentage does not diminish the importance of addressing this issue. When left untreated or treated insufficiently, the wound can rapidly move to an infected state that jeopardizes the rest of the limb. Yet, because of the small proportion of people with both CRPS and chronic open wounds, there is very little literature to guide clinicians in the best practice.
Looking closer at issues that complicate skin integrity, vascular changes are the ones most reported, and the most problematic. Vascular changes have shown varying relationships between changes in the sympathetic nervous system and temperature differences.3 By assessing skin samples, others have noted changes in nerve innervation of hair follicles, sweat glands, and blood vessels.4
For those who have issues at the skin surface, chronic edema is frequently encountered. Using the same population as previously mentioned, 40% of those with complications presented with infection, 35% with ulcers and 36% chronic edema. Chronic edema has been consistently linked to further development of infection and additional complications. In the general population, edema can be managed with compression garments or other mechanical compression treatment, but with CRPS, this treatment is frequently intolerable without additional pain interventions.
Therefore, other strategies are employed, which can include lumbar sympathectomy, sympathetic blocks, or other similar treatments that have not only provided a degree of pain relief, but also assisted in healing the lesions.4,5 Some have even resorted to indwelling epidurals to provide a tolerance for mechanical compression to aid in healing.6,7 In addition, hyperbaric oxygen has been used in wound treatment.8 Although research is still in progress, some results are promising. None of the studies, however, involved the wounds of those with CRPS.8,9
Aggressive treatment may also include surgical reconstruction to aid in arterial blood flow. This even has its challenges in those not affected with CRPS.10 As with any surgical intervention, the surgery itself can pose a risk of increased pain for those with CRPS. It is estimated that 6% to 10% of patients with CRPS will require surgery on the affected extremity for various reasons.11 If provided with appropriate interventions, the probability of negative consequences can diminish. The recurrence rate of those receiving a stellate ganglion block with a surgical procedure was only 10%. This was also seen in those with intraoperative intravenous regional anesthesia using clonidine and lidocaine. The intravenous anesthesia was felt to be superior, given the inherent difficulty and complications with a stellate ganglion block.11
Other skin conditions include ulcers, bullae and other types of wound formation. Infection is a frequent complication of any skin lesion. Typically infections are addressed with antibiotics. However, topical treatments and oral antibiotics have been minimally effective in those with CRPS.7 Laan et al noted treatments such as intramuscular long-acting penicillin injections, intravenous mannitol infusion and intravenous penicillin.2 When infection repetitively develops in wounds of those with CRPS, antibiotics are frequently ineffective. Reasons for resistance to healing with conventional methods include impaired oxygen consumption and vascular abnormalities that affect blood flow in the extremities.2,3,7
With such difficulty in successful healing of wounds in individuals with CRPS, prevention is a critical component. There are generally recognized factors that one can control to minimize the potential of skin lesions. These include abstinence from cigarette smoking, clean hygiene, healthy eating habits, and exercise as able and proactively manage diabetes if present.12
Despite these basic efforts, wounds may still appear. The specific etiology of these wounds has not yet been identified to help determine the best course for prevention. Therefore, when such wounds present themselves on those with CRPS, immediate attention by a healthcare provider is recommended. Having a vascular surgeon involved may be necessary to provide good wound care and comprehensive treatment once infected wounds begin to appear.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Does anyone with CRPS / RSD feel hot all the time?
Recent CRPS/RSD Diagnosis
