Pain clinic
 

Well after 19 month or so and lots of different meds and creams, Neurologists, Drs, AND Dermatologists.Skin biopsy results show small fibre nerve damage and today was the first visit to the pain clinic.
He seems to know his stuff im booked in for a SG Block next month first time for me im not looking forward to this jag in the neck.He explained to me any benefit will more than likely be short lived but is a good diagnostic tool and he can only do one side at a time.He is also referring me to a neurosurgeon to see if a SCS would suit me i think he said an external one first to test it.
Also referring me to a physiotherapist and a psychotherapist. Still no definite diagnosis of anything other than small fibre nerve damage.
I have faith in this Dr after 1 visit and he tells it like it is, No beating about the bush this could be something i have to learn to live with so no false hope.

This has taken me ages to type with my fat thumbs :( if i can get some relief from the burning i will call it a success

Glad to hear you have found a doctor that you feel confidence in. I do hope this treatment path works well for you and resolves or reduces your pain.

God bless,
Tessa

Thank you Tessa for your kind words Now i have had another day for all this to sink in i think i have been looking for some reassurance as to if im doing the right thing with those procedures, I cant sleep tonight for the burning in my hands so i think i have to try anything.I hope you are keeping as well as can be.:grouphug: Geordie

Hey Geordie,

I think we have all done the same thing.. wanting something to be done so badly and then once the wheels start to turn we second guess the plan - completely normal I think. The block seems to be a fairly common procedure both for temp pain relief (hopefully) and to assist with diagnostic purposes (all though that theory is debated). I didn't have that particular block but had many other injections and I am glad I did because it did help even if only for a very short time. I ended up going forward with the SCS and I am happy for the reduction in pain it has offered me. I am still seeking experts in the study of major nerve damage with the hopes that someone eventually might be able to attempt again to fix the damage without causing progression of the CRPS II. Anyways, I say all that to reassure you that doing something as long as you and your doctor are in sink with the path you are on and have talked at length about what you both expect to learn from the procedures then it is a good idea. Where we all get into trouble is when we blindly trust our doctors choice of procedures without either knowing what the other one's expectations are. Ask many questions and only proceed if you are comfortable with it.

Do take care -
Tessa

This is so true, and sadly I think the most common thing we struggle against. Sounds like you have a decent doc there Geordie, but always keep reading and researching treatments yourself. Even the best docs rarely have the time to research that their patient has! I hope the plan works for you and you get good results quickly :)

Bram.

Thanks for the advice Tessa and Bram i will be sure to ask lots of questions from everyone that i see and do lots of research when i can.

Thanks G

Well was at my GP today,on entering his office he said I'm glad to see you here and glad to get the report from your skin biopsy strange I thought to myself.He then went on to say to me he is glad the biopsy showed small fibre Degeneration as he thinks I was not believed by certain specialists he had sent me to.
As shocked as I was at him telling me this I told him I had that feeling about one in particular.The one who I thought this about was the doc who carried out nerve conduction studies on me as his report stated Normal results and its posable there could be small nerve damage but highly doubtful as he had never seen any nerve damage presented this way. while he was doing the tests I said to him he was putting the straps too tight around my hands and causing me more pain than the shocks were,he just ignored me as if I was waiting his time.I really hope he gets the Histology report

Anyway now I have that of my chest has anyone with Rsd/Crps had small fibre nerve damage?or could this be periphial neuropathy? This was all caused through a chemical dermal exposure and I have no dx as yet although crps has been mentioned. I'm going for a SGB next week will this tell if it is crps or PN? The more I read the more confused i get

You can have small fibre peripheral neuropathy as a direct result of CRPS.

CRPS can, through mechanisms that are not definitively known or understood, reduce the density of small nerve fibres. These are seen when punch biopsies are taken and examined. This means that CRPS is also regarded as a form of peripheral neuropathy. Most people won't know what damage, if any, has been done to their small nerve fibres because most people don't get punch biopsies as part of the diagnostic process.

The realty is that most people diagnosed with CRPS are able to be comprehensively diagnosed without the need for such a biopsy so the true numbers of people exhibiting this clinical sign are not known. Punch biopsies are regarded as invasive treatment so, like all invasive treatments, are not recommended for anyone with a diagnosis of CRPS. Except, of course, invasive processes that need to be done in an emergency. There is a risk of increased severity of existing CRPS symptoms, healing issues and the procedure itself could trigger excessive pain.

The SGB will not definitively confirm or reject a diagnosis of CRPS. It is just another diagnostic tool that is used to try and build a picture. The results (which can be a mixture of subjective and objective) will be considered by the physician along with all of the other information he has and the current, diagnostic guidelines for CRPS will be applied to reach an opinion on your case.

You could have a small fibre neuropathy without CRPS and you could have CRPS without small fibre neuropathy. Or you could have both! Simple huh?!!! Its best to go through the testing, do your own research from good, reputable sources like the RSDSA.org website resources and see what the doctor says. At least if you have done your own research, you will be informed enough to understand what you are being told and to ask probing questions. I think you probably just have to wait a bit longer as your doctor amasses the information but realise that no one test is going to give you a definitive answer where CRPS is concerned.

Well said Neurochic.

Given the nature of CRPS, the risk of spread and the characteristic symptoms of excessive pain in response to injury and skin problems with poor healing, there is no way a skin biopsy should be used as a diagnostic tool for CRPS. The disease is normally diagnosed through patient history and observation by a trained clinician. It is known and discussed in many research papers that there are very few (if any) reliable tests for CRPS, especially as symptoms are so variable.

Skin biopsy has shown small nerve fibre issues in patients with CRPS, but this has normally been as a result of research (where subjects have the risks explained) or because a procedure was already invasive. I sincerely hope the practice of taking a biopsy to decide a diagnosis of CRPS doesn't catch on.

I hope you get a decision and a good specialist to take care of you very soon. I am saddened by stories like yours where it is such a struggle just to find a sensible and knowledgeable doctor. You deserve better.

Bram.

Thankyou both for the information and advice I can relate to the biopsy site causing problems it has not spread as such but feels like a cigarette burn at exact site of biopsy.
I guess a dx is only important as to what treatment I need but whatever this is it sure is horrible to have at
And the meds that go with it have some bad side affects.

I've had this for a matter of months and it feels like years but some on here have had this pain for years and still no sign of a cure not a great thought.

Lots more research is needed on this by our professionals

Thanks again G

Forgot to say thanks for the site infoRSDSA.org neurochic I will check that out.

Apologies if you already know this :D but take 500mg of vitamin C a day - it has been proven to reduce the risk of CRPS spread, and as you have effectively an injury site where the biopsy was done, it's worth doing everything possible to stop any spread. Also keep that limb moving gently and don't let it sit still for any length of time!

Hope you have a better day :)

Bram.

Thanks Bram I never knew about the vit c helping with spread but have been told about moving as much as I can there words weer use them or loose them. I go for a Stallate ganglion block tomorrow not looking forward to that.

Lately I have been very snappy with people which is not normally me the next minute I could feel very emotional do you think this could be anything to do with my medication? Lucky I have a very understanding wife but then there's only so much a person can take she has suffered from fibromyalgia for about 15 years and dosent need me being a grump on top. Anyway enough about me I hope you are all having a pain free day.

Take care G

You are welcome :)

Unfortunately some of the emotional stuff is down to being in pain all the time :rolleyes: fear, mobility frustration etc....we all get snappy, the important thing is being aware of it happening :) Just talk to your family and make sure they know that you don't mean it and can't help it sometimes. Some of it is also part of the CRPS itself - much of what you describe can be symptomatic of CRPS, but don't panic though - just staying aware helps to minimise the effects.

Take care and have a good day yourself.

Bram.

worth viewing
 

Thanks Bram i guess knowing what effect it can have is half the battle. Hope you are keeping well.

Steelworker that link just takes me to general youtube no particular clip ? could you please try again much appreciated.

Take care G

I meant to say the sgb i had did give me some relief but when a woke next morning it was back to square 1.Not sure i would take anymore

Sorry posted from cell
 

Thanks for taking the time to post this Steelworker I will watch the full clip later today when I am on comp.