Does this sound like TMS?

Hi all,

I would really appreciate if you could take a few minutes to read this. I’d be grateful for any advice / answers / support. I’m at the end of my tether and struggling to see how I can get out of this.

I am hoping you can help me in judging if this is TMS (i’m struggling to see it, personally due to the number of symptoms and their patterns). However, I would be grateful for your thoughts.

I’m 28 years old and have been living with chronic pain and many other symptoms gradually increasing since November 2013. I was diagnosed with Multiple Sclerosis thirteen years ago when I was around fifteen. In terms of symptoms NONE of my new symptoms I have experienced since the end of 2013 were ever previously experienced.

Also, I have had no progression in my MS on any MRI scans since around nine years ago (roughly 2009/2010 since my last new lesion). So my catalogue of new symptoms it would appear to me (and my neurologist) are NOT MS related.

Since November 2013 I have experienced many new symptoms (FULL SYMPTOMS AT BOTTOM OF POST). Symptoms continue to increase.

NB. I also wonder if the insertion of metal coils for a varicocele embolization in May 2013 - soon before health decline could have been a ‘trigger’ - especailly with my history of autoimmune issues. I also had a flu jab/shot in October 2013 very soon before my health began to decline and continues to decline. I feel one of them could have been a ‘cause’. Or the medication I take (Tysabri - an immunosuppressant)

Summary of the findings from some investigations :

Mental health wise recently diagnosed with :

- “Personality Disorder unspecified (moderate with anxious, borderline, anankastic and paranoid components)”
- “Somatisation Disorder”
- “Social phobia”
- “Reaction to severe stress, unspecified.”
- “Recurrent Depressive Disorder”

Physical health, diagnosed with :

- Herniated disc (L5/S1) and disc bulge in rest of lumbar spine
- “Small hemi-pelvis” (one side smaller than the other
- Rotated / twisted sacrum
- In addition to this, Walking feels uncomfortable - in addition to sciatic pain / dead / heavy legs also feel not steady / rotated / squint. - one of my worse symptoms - stopped me from exercise, etc
- Raised CK levels in blood (sign of muscle damage)
- “Tight urinary sphincter”
- Varicocele
- Flat feet
- Very low testosterone (continuously)
- Skin biopsy - “chronic inflammation and early dermal scarring”
- Varicose veins - legs
- MS (as mentioned above but no progression for many years)
- TMJ tightness
- Muscle biopsy

My muscle biopsy, showed an “increase in internal nuclei…in approximately half of the fibres of the muscle biopsy sample”. So my neurologist told me : “In view of your previous history and the findings of your previous muscle biopsy of internal nucleation, the Pathologist has raised the possibility of limb-girdle muscular dystrophy or myotonic muscular dystrophy.”

I was sent to Genetics and asked to collect family history of muscle disease (of which there isn’t any in my family). She told me she didn’t think I had either of the muscular dystrophies but took a blood test and asked me to provide a detailed symptom list (below). Basically, it appears nothing will be found and if that is the case I don’t know what to do next.

I have been prescribed various medication but the only medication I now take ’Tysabri’ (an immunosuppressant - since March 2010) and Vitamin D.

My most frustrating / difficult / confusing debilitating symptoms :

- feeling ‘ill’ / unwell / feeling like a recurring virus etc
- Pelvic floor pain / groin / testicular pain
- Muscle pain whole body flu like muscle pain
- Hot
- Hot heavy tired weak legs calfs in particular
- Headache
- Can’t sleep
- Flu symptoms - feel like I’m going to feint. can feel so ill it feels like I’m dying (I know that sounds extreme)
- Itch
- Nausea
- Sciatica
- Deep internal pain - source hard to pinpoint
- Restless legs

(Full symptoms below)

I have read TMBS (Sarno) and HBP (Sarno) and regularly journaled, etc but have not had much success - Not getting back to exercise due to sciatic pain / pelvic floor / leg pain / etc / varicocele heaviness I am finding really hard.

To be honest, I can’t live like this and I just need a bit of hope. However, I would appreciate your honestly. If things don’t appear to be TMS I would appreciate that too as I am struggling to see it myself.

Thanks,

Stuart

P.S (I'm from the UK - uncase anyone is offering any location specific advice)

________

FULL Symptoms which I provided for Genetics appointment :

• Fatigue (can be significant)
• Poor sleep – waking
• fatigue / pain – Mornings in particular
• Sweaty
• Nausea
• Flu like symptoms / ‘ill’ / Fuzzy head / cotton wool / Cog fog / poor memory / concentration / fatigue / run down / irritable / extreme moodiness / headache Very hot / very cold alternating

– Head to toe :

• Hair loss – front – big increase in past 3-4 years
• ‘Pressure’ in face / nose / (like wearing a mask). Heavy / ‘tired’ face/skin Sore, tired eyes – sometimes poor vision – blurred / quite ‘dark’
• Teeth – tightness – (a feeling like after eating sugary food/drinks) Pain / tightness – jaw / under ear
• left teeth from back to front
• Mouth spots / Mouth ulcers – tongue / gums Throat pain lower
• Nausea
• Extreme Thirst / dry mouth
• Stiff neck / pain / lifting head from pillow – effort / shoulder pain / heavy weight around neck / stiff tired muscles
• Chest – clearing throat / poor swallowing – stuck feeling between throat / stomach – thirst (trying to ‘wash down’ food that feels stuck) – pain – thumped feeling – strangling feeling / shortness of breath upper back pain / Poor digestion
• Pain internal chest / knife / needle / pressure. Ill.
• Short breath. Arms heavy internal. Pain stabbing / needle
• Ribs – pain – muscles between ribs
• pain / tight / ‘tired’ muscles around chest /collar / shoulders / pecs into > heavy / ache arms. ‘Restless’ arms
• Pain / ‘heat’ in ‘Liver’ area – sensation of ‘liver’ (or something) ‘sticking’ to my ribs – swollen feeling. Internal pain – squeezing
• Occasional palpitations – fluttering
• Hands – dropping things more frequently – Some difficulties undoing buttons / bottles etc
• Upper back tightness / thoracic
• Rhomboids / trapizeus / neck / hot knife pain
• Stomach pain – alternating constipation / diarrhoea. cramp / pain. Extreme Hunger after BM. Fullness. Occasional BM very soon after eating.
• Pain / weak / fatigue feeling around whole pelvis muscles – don’t feel ‘stable’ Deep stiffness / pain / hard getting out of bath for eg. Heavy
• Pressure around pelvic – like a corset around my waist / pelvis groin. Pain/tightness in side of hips / pelvis
• Lower abdom / pelvic area pain – both sides . Weak / sore / ’tired’ perineum / pelvic floor
• Testicular / scrotal pain / heaviness. Elastic band around groin feeling. Testicular heaviness pain – deep abdominal
• Discomfort penile – ‘squeezing’
• Varicocele heaviness
• Testicular pain / inner legs down to inner feet
• Lower abdominal /pelvis / tired / weakness / stiff
• Inner thighs heavy ache. Tight up middle – pressure / squeezed internal central
• Pain throughout – from Pelvic floor / t pain / leg pain up to whole body muscle / bone pain. Muscle ache all over – legs etc
• Morning. Perineum into lower abdominal / pelvis / inner legs knees hot inner feet.
• Urgency / frequency but also shyness night – battle to pee. Urgent after bending down? Waking in night for pee but not much volume.
• Rectum – muscle heavy / ‘itch’ / tight / twitch / pulse / internal. Heavy Anus / perineum night golf ball. Restless perineum internal ticklely
• Penile skin changes
• Back pain (lower) / stiffness
• Lumbar spine – compressed carton
• SI joint pain.
• Sciatica both sides tightness glutes / hamstring – wrapping pain. Pain / tightness / weakness in glutes
• Pain / tightness sacrum – radiating pain
• Both – Heavy / tight / exploding / hot
• Feet and almost all legs / compression sock. tired / weak feeling.
• Restless legs. Uncomfortable, Always moving
• Legs – tight / ‘dead’ / heavy / twitching / cramping / deep pain / sensation of feeling like they will explode. Cold / sticky.
• Tightness behind knee / around ankles / around knees / quads /top of feet Weekend – couldn’t feel legs – paralyse.
• Heavy / tight dead legs. Heavy aching legs tired knees
• Deep calf pain / weakness / feel weaker / smaller
• IT band / behind knee
• Like wearing leg braces
• Cold (or hot?) water sensation running through legs Hot heavy legs & feet after walking
• Pain outer ankles / peroneal tendons Pain top of foot deep pain
• Pain inner in-step
• Under foot / sole pain
• Foot drop Fungal nails

 

Just by reading all this I would wonder for sure if you had TMS. Check out a good TMS doctor and therapist. Everything is structural problems and you said nothing about your personal life just some psych diagnoses. I say in the meantime get happy and be compassionate to yourself.

 

Hi Stu 1989,

Get professional TMS help if you can. I wish I had done so.

In 2011 In order to survive I made three rules up for myself only as to what TMS was (for myself only).

TMS has to be on a single issue level:

Chronic: This means long lasting. Long lasting means months if not years.

Unexplainable: Drs. are saying: “um” or refer you to someone else. Your pain is for no apparent reason.

Deep: Must be the pain hospital scale 3 to 10. ( I still have some pain ranging from 1-3. This is my acceptance only).


Everything else: I consider as the following:

Back door TMS, a real physical ailment turning to a TMS issue.

TMS Implications: We are psychological creatures subject to personality, society, family pressures. You can just about apply TMS reasoning to almost anything.

My definition of Pain: (applied to myself only) Physical or Anxiety or Fear)

You certainly have certainly many real physical issues and have my understand
and compassion.

Jot down a few rules and definitions for yourself, it helps. I am formally from the ol' country came to States in 1977. I hope sweet Plum sees this thread and comments, she lives there also.

Good Luck

 

With such a wide range of symptoms, and so many of them related to muscle tention, it certainly sounds like TMS. If it wasn’t, you’d probably need 7 or 8 difficult concurrent conditions to explain all that! And that seem seems highly unlikely. Do you fit the personality profile? Steve Ozanich (who wrote The Great Pain Deception) has said he’s even seen people heal from MS symptoms with TMS healing.

 

I’m really sorry that you feel so bad. In my opinion it is very important to find an appropriate doctor first. Unfortunately, I can’t suggest you any kind of medical treatment. What I do for my well-being is I watch my diet more carefully, include more vitamin-rich products. Some relaxing yoga exercises helped me to beat my headache and sleep problems. Another good thing is massage and spa. A friend of mine, who happens to be a massage therapist, suggested me to buy a foot spa to relax muscles and break tension. I chose one with high-frequency vibration after reading about it on homus (https://homus.org/best-foot-spa/ (Best Foot Spa for Your Home in 2018)), you can find more reviews on such products all over the internet though. Spa procedures turned out to be really effective – my feet are much better now. I’m not trying to say that you should only care about symptoms, but it may be a temporary relief until you find a medical specialist, who’ll help you.