PSSD, Withdrawal & Small Fiber Neuropathy?

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March 20, 2018 | 56 Comments

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  1. I can relate to all these symptoms mentioned by Dr Oaklander ,

    Dr Oaklander found that when patients with the condition were asked about their symptoms, they painted a very different picture. Most of them certainly did describe altered skin sensations, but they also listed the most severe and troublesome symptoms as fatigue, tiredness, reduced endurance and strength, cognitive and memory issues, dizziness, headaches, gastrointestinal problems, bloating after meals, weight loss, diarrhea, constipation, changes in sweating patterns.

    I really hope this is the answer for us all.

  2. I agree with Ruth on what Dr Oaklander found as this is all the symptoms that I have.
    A neurologists answer was pills for fits.
    Too scared to try this.

  3. When i return to UK i will definitely try to find out if i can have these tests done. This has actually given me some real hope that i can prove that PSSD is not “all in my head”.

    I will probably need a supporting letter from Rxisk, as nearly all the doctors at my doctors surgery are sceptical about PSSD.

    There is one doctor who was semi believing about PSSD, and i feel he might be persuaded to refer me to a neurologist. I definitely want to get tested and will do everything i can on my return to get referred.

    Also i wanted to mention i really think Rxisk are definitely onto something in saying that PSSD is caused by a small fiber neuropathy. It makes a lot of sense to me; even more so after reading this article.

    Whenever i get the small improvements in my PSSD it seems to be to do with something with the nerves in my genital area, especially around the testicles. I get a feeling like the nerves are trying to re connect, but are only slightly “touching”. This has happened consistently time and time again. I am almost convinced now that PSSD is more to do with the nerves than the brain etc.

    I have waited so long for some real leads and answers to PSSD. I have waited 10 years. I am very hopeful that this small fiber neuropathy theory for PSSD will turn out to be correct.

    Please do not give up Rxisk team. I really think you are on the right tracks. Also if protracted withdrawal can also be officially acknowledged from this, then that is even better still, as most doctors dont believe withdrawal symptoms can last longer than a few months at most.

    The sooner we can get PSSD and protracted withdrawal officially acknowledge, the better. Then people wont have to go through the isolation and misery of dealing with PSSD and enduring withdrawal all on their own, because it will be acknowledged as real.

  4. Also of note.

    Whenever my genital numbness is at its worst (it fluctuates regularly from being very bad where my genitals almost ache with numbness, to being milder), both my scalp and feet feel a bit numb (but not to the same extent as my genitals).

    This lesser but noticeable numbness in my scalp and feet only is noticeable when the genital numbness is really bad. I dont know if this is helpful in mentioning.

  5. Is there any connection with restless legs syndrome? – the inner restlessness and burning sensation and redness of the skin is similar I have seen it in a relative and it’s very distressing.

    • S

      You haven’t been reading all the blogs. There totally is a link – especially obvious with PGAD, which looks in many respects like a form of akathisia.

      Either that or you have been reading all and we just haven’t make it clear enough. Watch out for a post soon

      D

  6. Since we suspect that there are very many sufferers and certainly doctors, who, possibly, do not read the Rxisk blog posts, might it be an idea to have a letter that we could print out and take to our local doctors surgeries/ CMH centres asking if they know of centres where these tests can be done? The more centres found, the better I guess.
    Also, is there any point in those who are not suffering from PSSD, but regularly list the other symptoms mentioned, making enquiries about these tests? I’m thinking, in particular, of the sensations of feeling uncomfortably cold when no one else feels even cool, which is suddenly replaced by feelings of being ‘on fire’ whilst remaining within the same room with no change of temperature. (Maybe that reaction is already understood and named of course, in which case I will understand that it falls outside of this category).
    With reference to the loss of sense of smell and/or taste – the only time that mine work effectively is if I have to be on steroids for my asthma. It is only then that I realise what I’m missing. My pleasure in eating, generally, has to be by the different textures; pleasure of nature simply by the different hues never the scents.
    For the last week I have been living on low carb. and, magically, I’m beginning to taste food – only slightly, but certainly a marked difference. I doubt whether any of this is of relevance – but, if nothing else, it does show how tiny changes can sometimes make an unexpected difference.

    • The odds are that most complex withdrawal problems, including from drugs like quetiapine involve a degree of Short Fibre Neuropathy. We have been trying from the start to keep people with both akathisia on the one hand and withdrawal on the other hand on board. PSSD and PGAD seem a very clear example of what happens in akathisia and complex withdrawal

      D

      • dr healy, do you find a deferent neurobiological damage of pssd made from ssri and anti psychotics like risperdal ?

        do you find a connection betwin pssd, pois (post orgasmic illness syndrome) and chronic fatigue syndrome ?

        i got them all together at age 13 from risperdal.

        • Risperdal and ssris give a different sexual damage I think. POIS is a different condition again. Not sure re links to CFS

          D

          • Please may we have a little more detail re
            Risperdal / SSRIs cause a different sexual damage?

            This exploration and debate around small fibre neuropathy is fascinating. There may be implications for such a wide range of medical specialities, and so many patients.

            I perceive that the prevalence of SFN in those multiply injured by psychiatric dugs may be very high?

            Painful hands (intermittent) and colour changes analogous to erythromelalgia feet illustrated above cause daily distress in our experience.

            Dr. Oaklander’s podcast transcript made compelling reading.

    • Mary, low carb makes a world of difference for me as well. If I have more than 10% carbs, or more than about 35 g in a day, there is hell to pay when trying to get to sleep. Mostly temperature fluctuations and anxiety. Slight restless leg. It’s like a predictable cycle I just have to get through and takes about 2 hours. These particular problems came on gradually after I finally got off Seroquel. I didn’t have this in Klonopin withdrawal and I’ve attributed it partly to menopause. Not a cure all and not easy at times but I’ve been doing keto for about 8 months and have noticed some cognitive improvements as well.

  7. Casting around for news of the corneal confocal microscopy (CCM) test, I kept running into one group of researchers over and over — at the Univ. of Manchester. (It did seem to be in use in the USA, but almost exclusively in eye diseases per se. Especially those that might be treated by expensive and highly speculative stem-cell therapies. That’s where the big money is, I guess.)

    But in Manchester they’re excited about its use in diabetic neuropathy, a less profitable but much more widespread problem. CCM seems to correlate well with small-fiber damage both in the hands & feet, and in hard-to-study places like the heart and other internal organs. It could be used to diagnose such damage early. Or evaluate which treatments might slow it down over the long run. They have also used it to study folks with a neurological disorder called Charcot-Marie-Tooth (CMT) which involves both large- and small-fiber damage. The role of the small-fiber damage has always been more mysterious.

    The lead author on most of these studies was a Prof. Rayaz Malik who studies endocrinology and diabetes at the U of Manchester. However, a couple of people on his crew also work out of the Salford NHS Trust. They seem like the kind of people to whom sheer intellectual curiosity is not entirely alien. If they could not do this test on PSSD sufferers themselves, they might be glad to help you figure out where in the UK to get it done.

    • Johanna, I think the Manchester Uni. work is also linked with Liverpool Uni. Have been in touch with my niece who is a medical statistician/ researcher there asking if she is aware of any of this. (I seem to recall that her team did something about diabetes at some point therefore worth a try anyway).

  8. Do you also have ideas in treating this. There was a paper wrtten by waldinger where they used low power laser irradiation therapy

    • We have mentioned this in posts and on the website. The hope behind the RxISK Prize is to get someone building on what has already been done to come up with a way to make a bid difference

      D

  9. I had the skin biopsy test for small fiber neuropathy done by Dr. Chemali at Sentra Hospital in Virginia Beach, VA. I have PSSD but this test was done for dysautonomia and it was covered by my insurance so I don’t know what it would’ve cost otherwise. My results were normal. They also do this testing at Johns Hopkins in Baltimore, MD.

  10. Any research or new ways of identifying this would be most welcome , we need new treatments and fast I’m 4 years into horrendous withdrawels with all the above symptoms and showing no signs of healing and still to this day I am told by my doctor that’s it is all in my head ,

  11. Dear Healy, what do you think it will the cure for drugs caused progressive toxic enchephalopathy too???? I mean when everyone had got severe adverse reaction on 1month use med with severe cognitive and emotional symptoms and it is only worsen 2and half year later? Thank you

          • Thankyou David The pains I had in my head for years constant aren’t as bad now but I have had symptoms in all parts off my body but the constant head pressure pain was the worse like somthing out a horror film couldn’t believe what was happening to me and it went on for years no let up like a constant torture. I still get brain zaps when drifting to sleep some nights but not as often and have had periods off months where the zaps disappear then reappear. I feel the effects off these drugs affect all bodily systems like you have said before. I feel like I suffered some kind off traumatic brain injury nervous system damage never been the same but not as bad as the start. Recently told I have fibromyalgia but I’m sure this is related to what happened to me wake up in the morning feel like I’ve been run over by a truck I have huge long term memory problems since I stopped but short term memory is okay.

    • Ketiperri. I was diagnosed with Lexaoro induced Toxic Encephelopathy. Are you in my Neurotoxicity Facebook Group. It’s for people that are not necessarily in withdrawal. But had toxic reactions to SSRIs. Like the people that have committed suicide. The difference is we are still alive fighting a battle that we can’t seem to win. Look for us and me too if you like.

    • This reference is very interesting – mentioning ‘chemotherapy induced nerve damage’. As the acne drug (Ro)Accutane isotretinoin was also developed as a chemotherapy drug, ((this being the prescribed med, several courses of which led to our son’s akathisia and then suicide), and as so many of those taking it get PRSD; if the PRSD is indeed nerve damage, then maybe we can now see why. And hopefully, now do something to restore normal working order. Psychotropic prescribed meds for the RoAccutane-induced never-ending ‘low mood’, added to the PRSD caused by them as well, plus a mini psychosis from the synergistic effect of the two kinds of medication.

      • Another thing, maybe totally irrelevant, but in my son’s paternal family Raynaud’s disease is common. My husband has it quite badly, his feet when he gets out of bed in the morning look exactly like the picture of the red swollen feet in DH’s post. One toe never ‘feels’ any more, at any time, and sometimes turns blue black in colour. He has reported all this to the GP who ran blood vessel conduction tests and they were ok. Whilst driving, his fingers go white and feel numb, they lose all sensation. His own father and brother had/have this too. So maybe our son had an inherited gene tendency already for nerve damage and RoAccutane could have accentuated it?

  12. There are 2 Consultants Neuro-opthalmologists listed for the Birmingham and Midlands Eye Centre. Lydia Alverez and Timothy Mathews. Referrals welcome from all areas of UK. Need referral letter from GPs to include :
    Sub speciality requested, Referral details – name of GP, practice name/address. phone no. date of referral – Patient details – name, sex, d.o.b. NHS/rxk No. address/phone no. Medical history, Current meds, Significant history, including previous consultants seen, Active problems, clinical info. Request routine or urgent? Reason for referral, Preliminary investigations including management appropriate to reason for referral, Also info regarding special/social circumstance Does person have mentalhealth or mobility difficulties, interpreter needed?
    Some of the above could be tricky depending how the referral letter is written I would want to see a copy myself.
    Another option in the Birmingham are is – BMI The Priory Hospital tel. 01214402323 Consultant neuro-opthalmologist Mike Burdon. A private first consultation is between £150 – £250. They would accept referrals from any health professional not necessarily just a person’s GP.

  13. Meschelle; wouldn’t it be disappointing if everyone with PSSD got tested for small fibre neuropathy, and they all came back with normal results.

    • Not necessarily. If there is an abnormality on biopsy etc, this points to damage which while it may not be permanent is not helpful. Its possible to have a peripheral neuropathy with a disturbance of function rather than a loss of nerve fibres.

      If the biopsies and CCN are all normal, the next step is to explore gene testing for sodium and other ion channel genes. These may or may not be somewhat more reversible

      David

      • I wasn’t able to get tested until 2016 – three years after Lexapro withdrawal and beginning of my PSSD. I wonder if I had some structural neuropathy that had healed to the point of being undetectable by the biopsy test (although my PSSD did NOT heal) but left functional damage. I’d be interested in genetic testing.

  14. I see my optomologist in early May and I’ll ask him about the corneal confocal microscopy. My hunch is that the skin biopsy may pick up the small fiber neuropathy in some areas of damage but not others. I think it will be clearer to know where to take the sample for the feet vs the bladder or autonomic nerves. My experience w nerve blocks for the pelvis also makes me think that where exactly the sample is taken will make a difference. However, I could be totally wrong.

    How far along is the science for sodium and calcium genes that may be relevant to our purposes? I don’t know anything about genetic testing.

  15. Frozen feet at night and hot feet during the day.
    I don’t know which one is worse.
    I’m staying away from those pesky tests that don’t conclude anything.
    Not all tests conclude a solid diagnosis.
    Why would I want to subject myself to further harm?
    There must be an infra red scan, of some kind, that determines thermal temperature through out ones body.
    I’m done with being a lab rat.
    I was a pin cushion, when I had a very bad adverse reaction and no one cared to tell me what I was going through when I was being maltreated.
    What would more tests conclude and what would more meds do?
    Sorry to sound pessimistic but I would rather put up with all the medical issues I have than be subjected to tests, jabs and meds ~ that’s me!

  16. Isn’t it wonderful to see everybody pooling their efforts and moving ahead with this? Spruce, I can understand your tension about it – hence your thought of what if all tests came back normal but I’m sure that, deep down, you can see that ALL avenues have to be attempted otherwise nothing can possibly be gained. I appreciate that, because you want a cure so much, you dare not even set your mind on that possibility incase of further disappointment. Maybe now, more than ever, is the time for all of us to be thinking very positive thoughts and be grateful that, at last, things seem to be on the move. Good luck to all who go ahead and have a test done – I shall look forward to hearing about them. We must remember that without going ahead and being tested we will grind to a halt again; that would be such a disappointment for us all I feel.

  17. Of course I will go ahead and get tested Mary H, and I am trying to stay positive.

    This small fibre neuropathy theory has offered the best hope yet in my opinion, of finding a real way forward with PSSD.

    I was just pointing out how disappointing it would be if the testing didn’t really lead to any solution etc.

    I was feeling a bit pessimistic about things the day I made the comment.

  18. Re: the link sent by Mark Sanchez: Here’s the underlying research paper, and the researcher heading this up, Anne Louise Oaklander MD. Right now her team is testing intravenous immunoglobulin (IVIg) in people with painful peripheral neuropathy that is “apparently auto-immune.”

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5791555/

    http://www.massgeneral.org/doctors/doctor.aspx?id=17253

    They have also estimated up to 40% of people “labeled with fibromyalgia” may have a condition of this sort. Since one popular theory of fibromyalgia is that it is “really depression,” and since it’s been so widely treated with Lyrica and Cymbalta even by doctors who don’t subscribe to that theory, I wonder if some of those 40% are suffering from an effect of their treatment?

    I have to admit being leery of some of this … We’re talking about treatment with powerful immune-modulators which can cause pretty drastic effects, and are ruinously expensive (and thus wildly profitable). When I clicked on the Science Daily article my screen lit up with ads for Enbrel and Rituxan. And some of the splashy publicity coming out of Mass General/Harvard — that both Fibro and Irritable Bowel Syndrome sufferers may now have “HOPE,” or that a new class of “non-narcotic pain relievers” will solve our opioid problems — hints that someone is angling for an ENORMOUS market of people for whom the treatment may be far worse than the disease. (Search Pub Med for the works of AL Oaklander and you will find — hurrah! — they are all free for download alla sudden.)

    Still, they may be on to something important–especially if a limited course of therapy rather than long-term treatment could solve some of these problems. Wouldn’t it be ironic if a lab at one end of Mass General identified some of the damage being done by the enterprising Psychiatric Vanguard at the other end of Mass General? Watch your back, Doctor Oak!

  19. Many health issues are NOT GENETIC.
    They are drug (prescribed medicines) induced.
    Until, there is transparency, accountability and all concerned taking responsibility for the HARM these meds have caused, sadly we are always going to hear the same nonsense, over and over again.

    • Carla

      Tuberculosis is genetic. More so that for instance schizophrenia. It is highly heritable. This means that if you have a certain genetic make-up you are more likely to catch it. It doesn’t mean genes cause it. Even if you have these genes, the tubercle germ causes tuberculosis.
      In the same way, only some of get bad withdrawal or akathisia from SSRIs. Doesn’t mean these genes cause it. The drug does. Finding if there is genes and if you have these genes doesn’t mean they’ve caused it. They help prove you have what you say you have

      D

  20. David,
    Not all tests are black and white. There are many shades of grey.
    When many of us needed support and answers, in our times of need, they (they know who they are?), left us in a lurch.
    Many of us know, what we suffer with and unless we are seeking compensation, many of us do not have to prove anything to anyone.
    If one understands how western medicine works, it is not what it all seems to be.
    Western Medicine is a big scam.
    Western medicine creates many of the problems and then they want a pat on the back when they find a cure for what they induce.
    This is not healing it is about business and money.

    • C
      Non-Western medicine is an even bigger scam. Anywhere people are vulnerable there will be rip off merchants. The biggest problems in the Western medicine case are a set of lies – one that we let companies get by claiming they have the science on their side when we aren’t let see the data. The second is that doctors make a comfortable living out of drugs being available on prescription only – this is done to protect us – but they aren’t living up to their side of the bargain. Aside from that …

      D

  21. David,
    I completely agree with you.
    Sadly, when we have a medical problem (s), we rely on so many people in the healing profession to be our saviour.
    Some people swear by them, whilst others believe it’s all hocus pocus.
    What other choices do the vulnerable have?

  22. One of my worst and most enduring symptom is a balance problem it is a constant rocking and feeling of motion when I am still. I have noticed that my feet don’t feel connected to the floor and wonder if this is neuropathy?

  23. How many brain injuries are a result of prescribed medications?
    And how many brain injuries are misdiagnosed and mislabelled?
    – encephalitis
    – cerebritis
    – vasculitis of the blood vessels of the brain
    – ischemic stroke
    – cranial neuropathy
    and any other brain damage that these prescribed medicines induce.
    What worries me, is if it is misdiagnosed and labelled as dementia, a mental disorder or some other incorrect diagnosis.
    Brain injuries do result from prescribed medication.
    I should know because I have a permanent problem that resulted from an adverse drug reaction.
    Seventeen years later, it is still there and I know what I have to deal with however, I keep it to myself.
    If I had had all the unnecessary tests back then, I most likely would not be here today.
    So, yes, it pays to be stubborn, sometimes.
    Hence, the reason why I preserve myself the best way I can.
    The damage is done and further tests, in my opinion, just adds to further humiliation and more problems.

  24. For what’s it’s worth, I had an EMG test done on my legs and hands and they found sensory neuropathy in my feet (not my hands-although both remain numb). They didn’t check the genital region. They tried to play it off as mild in my feet, but if these medications caused large fiber neuropathy in my feet, imagine what they did to other parts of the body! Even more scary is what has been done to my brain neurons? MRI scans of the prudential nerve was clean. Although I’m not sure an image of that nerve would provide any indication of malfunction in that nerve. The PFS guys with severe ED are said to have severe neuropathy of the prudential nerve. Dr. Healy, any idea what test they are using to find that neuropathy? Would an EMG show more of a functional dysfunction of a nerve rather than just a visual inspection?

    • Thanks for this. Very helpful to get. You are right – if there is large fiber neuropathy there is likely to be small fiber neuropathy also. We need to get as many people as can to take as many different tests as they can and see if we can discern a pattern in the findings.

      David

  25. I´m suffering from PSSD. I have been doing some literature research looking for polyneuropathy and its causes, especially toxic polyneuropathy. I´m quite sure there is connection especially in regard to C-fibres. My symptoms consist, apart from the whole cascade of PSSD, from numbness of scalp, particular insensitivity to touch – I would say I can identify topographic position of the touch, basic qualities, but any emotional retine is missing – my body is not able to recognize sensual touch, carring, caressing etc. Just plain neutral touch. It is annoying. It has many consequences: I don´t feel my children cuddling with me, my partner trying to engender erotic touch and atmosphere, I don´t feel peeple if they hug me. I´m isolated, cutt off my body, cut off any pleasure my body was used to convey before SSRI. I have also particular anosmia, again I can smell something but completely without any affective respond. Fine and subtreshold scent are undetectable not triggering any reaction . My erotogenic areas ceased to generate any thrill and pleasure, the same is with kissing – I used to love kising my partner – nowdays it conveys nothing – sometimes felt even disgusting – it triggers no thrill. Another interesting symptom I suffer from is sensation of permanent lack of light – like dimmed vision – it is peculiar and as expected nothing wrong with my eyes on standard ophtalmotologist assesment. I gave myself trial with B vitamins with no avail. There is much more to report. What will be the best place to report, David?

    • Petr

      This is a wonderful description. One of the best I have read. If you can send a more detailed one to david.healy@rxisk.org, it might work well as a post in its own right but also as a good description to send to researchers we are in touch with to help trigger their interest.

      David

        • Suzanne

          The main group we have been liaising with are in Maastricht but no one at present is near to doing anything. Its never easy to approach a research group who are busy researching their ideas with an idea that is not one of theirs.

          The key thing to nail down is whether there is gross nerve damage – c fibres probably – that can be detected on skin biopsy or CCM – if not then the right group for us will be one that deals in the genetics of sodium or other channels which would cause nerves to malfunction rather than be missing – hence the need for people to get tested – and to continue to provide good descriptions of the problem that might help some research group make a connnection.

          D

  26. Are C fibres involved in tardive distonia/dyskinesia? Tried googling but nothing comes up. I’m not sure if anyone knows what causes TD except it’s been linked to messing around with dopamine by antipsychotics (and dopamine agonists in Parkinsons). And affects muscle function. Hope I haven’t missed this somewhere.

  27. I had QST done previously at San Diego Sexual Medicine when first looking for help with PSSD. Abnormalities were detected. Here is the doctor’s write-up:

    Quantitative sensory testing used the right pulp index finger as the control site. The test sites were the glans penis, right lateral shaft and left lateral shaft penis. Vibration perception threshold values were 4 volts, 5 volts, 4 volts and 4 volts, respectively. The cold perception threshold values were 21 degrees, 12 degrees, 16 degrees and 12 degrees, respectively. The heat perception threshold values were 30 degrees, 40 degrees, 39 degrees and 39 degrees, respectively. Quantitative sensory testing reveals elevated vibratory, cold and heat perception threshold values. Results of this test are abnormal and are consistent with mild-moderate sensory neuropathy of the dorsal nerve branches of the pudendal nerve.

  28. Interesting that the withdrawal symptom of burning might be related to sodium channels. Would taking potassium counter this, I wonder?

    I am going to suggest this to people experiencing the burning sensation and conduct a bit of an observational field study (see our discussions about burning http://tinyurl.com/yd6ybtta
    http://tinyurl.com/y93oqtqe
    http://tinyurl.com/y7tl65t2

    As people experiencing psychiatric drug withdrawal syndrome are often hypersensitive to internal stimuli as well as external (and drugs in normal doses as well), a very small lowering of the intensity of the signal might not trigger the hypersensitivity reaction.

    On SurvivingAntidepressant.org, we also frequently see a withdrawal symptom people describe as “restless leg” that often responds well to magnesium supplementation (glycinate or citrate), magnesium oil, or Epsom salts baths (magnesium sulfate). As magnesium counters calcium, I wonder if the calcium channel is involved, causing abnormal muscle tension, again in the context of hypersensitivity.

    • Alto

      Thanks for these suggestions. They map onto details we lay out on our complex withdrawal page where we run through what is known about TRP channels on which Magnesium etc works.

      We don’t seem to be able to get people to go to this page and begin to engage with the issues. This is an area that needs crowd-research. I’m not in a position, or even want to be in a position, to direct people to try this or that based on what is known about TRP channels but I do wish people would investigate this more and hope that some investigating might involve some testing safe options out and reporting back as to whether there are any effects – good or bac

      The one thing rxisk has taught me is that the average person has a great capacity to research these things and get good answers – motivation is worth more than expertise in my view. The expert input we can get from reporting back to others and this can help keep feet on the ground but waiting for an expert to find answers is a mug’s game

      David

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