CRPS ---- aka ---- CRAPS!

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.

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

Morning

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.

Good luck and stay calm.........

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.

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.

Jayne xx

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

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

Hi Jannett,

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!

Take care,

Jo

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

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

table

Patient Identification

1. Place red bracelet on unaffected limb

2. Place red dot sticker on patient chart

The Joint Commission on Accreditation

of Healthcare Organizations has mandated

the healthcare institutions that

they accredit to assess and treat your

pain. Pain is now to be assessed as the

fifth vital sign. Patients have the right

to demand pain control and to be pain

free.

Hospital Protocol

RSD/CRPS Patient:

Handle With Care!

PO Box 502

Milford, CT 06460

Toll-free: 877-662-7737

info@rsds.org

rsds.org

This is from a John Hopkins Paper to big to put whole thing here.

Spread of Symptoms

_ More than 77% of respondents report spreadiing

of symptoms to a regiion other than the siite of

the oriigiinall diisease1

_ The exact frequency of spread of CRPS-I iis not

avaiillablle iin publliished lliiterature2

_ A pattern calllled ‘‘Independent Spread’’ iis

estiimated to occur iin 6..4% of CRPS-I patiients2

_ Other iinvestiigators agree that spread iis not

uncommon

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.