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At the moment with McArdle’s

At the moment with McArdle’s

WARNING ADULT CONTENT

Information for people with McArdle disease [1] for them to share with their partners and help achieve good sexual relations. 


  • Sexual activities can cause problems for people with McArdle disease, they: 

– are usually intense (anaerobic) 

– can involve static, tensed muscles (isometric) 

– will likely involve repetitive movements 

  • All these can present a risk for people with McArdle disease. 

  • It is important to be aware of the risks. 

  • Above all, good communication with your partner is vital. 

  • Use these suggestions to mitigate the risks as far as possible, in order to achieve fulfilling sexual relationships.

At the moment with McArdle’s

Before you start

If you are not familiar with subjects such as ‘second-wind’ and ‘30 for 80’, please first learn about these. There are resources on our website – see back cover. If you also have another medical condition you should consult your medical practitioner before making use of this guidance.


Good communications with your partner

Possibly the most important aspect is communication with your partner. It is very beneficial to talk in advance as you will not want to stop to have a technical discussion whilst in the throws of passion.

Your partner needs to understand the basics of your McArdle’s. They will then understand the risks and be better prepared to make adjustments, or take a break at what for them may be a critical moment.


If you hurt yourself

If you incur a contracture you need to rest and drink water. You might consider taking a few teaspoons of sugar (unless contraindicated). You can take pain medication, but preferably not one which is eliminated by the kidneys. If not starting to improve within a few hours please consider the usual advice about when to go to hospital (see the “At hospital” leaflet or the Emergencies button on our website).



At the moment with McArdle’s

Aerobic fitness 

As with most other forms of physical activity, improving your overall aerobic fitness will also help to improve your activity tolerance when engaging in sexual activities. So this is another reason to engage in regular exercise [2]. Think about which muscle groups may be involved (thighs, arms, back, abdomen) – aerobically conditioning these muscles may lessen the risk of muscle damage. 


Sugar beforehand? 

Sexual intercourse is an excellent example of the application of the often quoted “sugar before exercise” advice for people with McArdle’s. A research paper advises use of sugar in this way only a few times a week and only when there is a risk of getting a contracture. The amount recommended is 37mg of sugar (sucrose, equal to a can of Coke), to be drunk 5 minutes before the activity [3]. 


If you are on a low carbohydrate diet you are likely to have circulating ketones in your blood and would most likely gain no extra benefit from such a sugar load. In fact taking it would probably be counterproductive. 


Get into ‘Second-Wind’ 

Suggestions such as the following may be difficult to achieve without creating a very false atmosphere and destroying the spontaneity and passion. However, it will be enormously helpful if you can get your whole body into ‘second-wind’ before sex. Try to be creative. For example, maybe you can pop out to a bar for a drink together before walking back home (10 minutes plus would be good) in the expectation of enjoying sex as soon as you get home [4]. 


Choice of activities 

There are many activities that you can share without always having full intercourse. Be ready to choose, when appropriate, options such as kissing and cuddling, masturbation, mutual masturbation, oral sex, use of sex toys, etc. In particular having a vibrator available may be a useful option should a man in the partnership feel unable to continue to satisfy his partner. 


Again, communication with your partner is an essential element. You may wish to purchase a sex manual to help you both fully appreciate these options.



At the moment with McArdle’s

Abstinence and foreplay 

If your goal is orgasm, which it doesn’t always have to be, then abstinence from sex and masturbation for some days or more in advance is likely to help to shorten the period of intense activity needed to achieve orgasm. Of course, you also need to consider your partner’s desire for orgasm and satisfy them. It will help if they too have abstained for some days beforehand. 


Lengthy, gentle foreplay is likely to increase arousal for both partners, and that too will help to make orgasm more readily achieved without lengthy intense activity. 


Who does most of the work? 

Sexual intercourse is a joint effort. However, that effort does not have to be expended equally between the partners. As a very general rule it is likely to be better for the unaffected partner to be in the “top” position and take the more active role. Although both positions can be physically demanding, it is best that the unaffected partner contributes more of the thrusting which can be extremely demanding on many muscles, most often the thighs. 


Sexual positions 

No doubt you and your partner will wish to experiment with different sexual positions. You need to bear in mind the usual caveats. Positions that will present great difficulty are for example squatting, crouching, and even thrusting whilst standing is likely to be challenging. 


Ideally, the affected person should be in a supported position rather than bracing or using tensed muscles to maintain a position. This will often mean lying down or being supported by something, such as a cushion or a piece of furniture. Don’t be afraid to experiment and try new positions, but with any new position be prepared – be aware of the sensations in your muscles and be ready to stop if necessary, and revert to a position that suits you better. Positions are a personal choice, but avoid holding a position with tense muscles. A sense of humor may be needed when positions don’t work out or are found to be too intense. 


There are many books and online resources that will explain different positions. They will help you select positions to experiment with, yet avoid static (isometric) positions which are the most damaging for people with a muscle GSD.



At the moment with McArdle’s

Take a break when needed 

If the affected person is taking the more active role, it is essential that they follow the usual guidance when they sense problems starting. This may be a switch of position to move the stress to different muscles, slowing down or pausing for a rest. Remember the “30 for 80” rule – 30 seconds rest to restore 80% of your immediate energy store. If you need longer, perhaps interrupt the intercourse and switch to other activities for a few minutes. As said several times already, communication with your partner, even non-verbal, is very valuable. 


The post coital period 

After reaching orgasm it is important not to hold muscles in a tensed state for many seconds, ensure that you quickly relax again. Your muscles may be slightly cramped, so it is a good idea to move the affected muscles as soon as possible, this will promote blood flow to the muscle and ease the cramp. As long as the muscles are not in contracture, a gentle massage from your partner may be very helpful. 


Anxiety about performance 

Anyone can get anxious about how they will perform, or what their partner will think. This may be particularly so for young people when first experiencing sex, or for anyone with a new partner. Talking with your partner in advance will be the best antidote for your anxiety. For young people, men in particular, the anxiety can be intense and even affect the ability to get and sustain an erection. Anxiety may also exacerbate tension and cause tightening of muscles. 


You may want to consult your GP about these issues. You may also wish to be referred to a psychologist or a sex therapist. See back cover for US and UK professional bodies for sexual and relationship therapists and through them obtain details of local services. For other countries, you can look up such bodies on-line. 


More leaflets 

We have a range of leaflets for many different situations. Please see the Resources menu of our website.



At the moment with McArdle’s

Sources of additional help 

American Association for Marriage & Family Therapy. 

112 South Alfred St, Suite 300, Alexandria, VA 22314, USA Tel: 703-838-9808 Web: www.aamft.org 


College of Sexual & Relationship Therapists.

Suite 48987, PO Box 6945, London W1A 6US, UK Tel: 020 8106 9635 Web: www.cosrt.org 


References

[1] Clinical Practice Guidelines for glycogen storage disease V & VII (McArdle and Tarui) from an international study group. Neuromuscular Disorders 31 (2021) 1296–1310. https://doi.org/10.1016/j.nmd.2021.10.006.

[2] Aerobic conditioning: an effective therapy in McArdle’s Disease. (2006) Haller RG, Wyrick P, Taivassalo P, et al. Ann Neurol; 59: 922e8. 

[3] Effect of oral sucrose shortly before exercise on work capacity in McArdle Disease. (2008) Andersen, ST, Haller, RG and Vissing, J, Arch Neurol 65. 

[4] Outcome Measures in McArdle Disease. (2006 ) Quinlivan, R, Vissing, J, 144th ENMC International Workshop, 29 Sept-1 Oct 2006, Naarden, The Netherlands. Neuromuscular Disorders 17: 494-498. 


Further information 

A range of publications is available on our website. Browse on-line or download free PDFs, such as: 

Medical overview: A quick guide for medical professionals. 20 pages. 

101 Tips for a good life: Simple, practical tips for people living with McArdle’s. 164 pages. 


DISCLAIMER

IamGSD uses its best endeavors to provide accurate, factual and up-to-date information on this ultra rare condition. However, each person must take into account their own circumstances, diagnosis, and any additional genetic and medical factors and is advised to consult with their doctor before making use of our generic information and guidance. Please refer to the disclaimer on the Medical menu of our website.